Recently, I had the opportunity to give a talk at the Inclusive Design 24 Conference (ID24) called “Why Everyone Should Design For Chiari Malformation,” in honor of Chiari Malformation Awareness Month. This talk was especially meaningful for me, as I ended up giving it the same week as I began experiencing symptoms related to Chiari Malformation nine years prior, and it was amazing for me to be able to share how that experience has influenced how I use various products and accessibility settings. Below is the link to the original audio-based talk and a transcript of my talk as well.
Why Everyone Should Design For Chiari Malformation
Hello everyone and thank you so much for joining me for my session at ID24 on “Why Everyone Should Design for Chiari Malformation.” I am honored to be speaking here tonight from my room in Virginia to audience members from all around the world, with a special shout-out to the amazing students, faculty, staff, and alumni from George Mason University who are joining me tonight. Without their amazing support over the years, I would have never been able to find the words or the confidence to talk about living with this condition, and I’m grateful that they have empowered me to use my own lived experiences to help make the world a better place for people who live with disability and chronic illness. Today, I am going to be sharing why everyone should design for Chiari Malformation, and how this condition influences how I use technology and various accessibility settings. Please note that I am not a doctor and that the materials and content shared in this talk are not to be considered as a substitute for professional medical advice, diagnosis, or treatment, and I will not be taking questions from audience members about the specifics of getting diagnosed or treatment options, as these should be reserved for a qualified medical professional. With all of that being said, I know that this condition is not familiar to most of the audience, and I cannot wait to tell you more about how designing for Chiari Malformation can be beneficial for everyone.
What is Chiari Malformation?
One of the main questions I received when this talk was first announced was “what even is Chiari Malformation?” Well, the short answer is, it means you have too much brain to contain. With Chiari Malformation, your brain tissue extends outside of your skull and into the spinal canal, due to a small or misshapen skull. Chiari Malformation is typically present at birth, but symptoms of the condition may not appear until later in life. At least one in one thousand people have Chiari Malformation, though this number may be higher as many people might not even know it, as the condition can be completely asymptomatic. It can also be co-morbid with other disabilities and chronic illnesses including Ehlers-Danlos Syndrome, a condition that I do not have. The amount of brain tissue you have in your spinal canal, also known as the size of the descension, does not influence whether you will be symptomatic or what symptoms you will have, as people with large descensions may be totally asymptomatic while someone with a much smaller descension may live with debilitating symptoms that are difficult to treat. As my neurosurgeon put it, medical imaging shows a 2D representation of a 3D problem, and many doctors look at managing the symptoms of the condition instead of just focusing on the size of the descension. There is no known cure for Chiari Malformation, although there is a surgical treatment called decompression surgery that can help with alleviating symptoms, however, there are many factors that go into whether someone can have the surgery or not. If you want to learn more about Chiari Malformation from a medical standpoint, I recommend reaching out to a neurologist or researching the condition further using reputable sources such as the National Institute of Health or MedlinePlus.
Chiari Malformation Symptoms
In my opinion, the various symptoms and symptom combinations of Chiari Malformation make it exciting to design for. While not everyone has the same symptoms, the most common symptoms of Chiari Malformation include pain in the back of the head that can fluctuate with position changes or when sneezing, balance issues, numbness or tingling in the hands, feet, arms, and legs, dizziness, vision problems, poor coordination, hearing loss, and general chronic pain in the neck, shoulders, and back. The symptoms can also come on very suddenly and without warning in some cases- for me, I was sitting in math class the second week of high school when I was 14 years old, and it felt like I got smacked in the back of the head with a textbook. Symptoms can also gradually develop or change over time, and I watched myself go from being able to tap dance in recitals to not being able to walk in a straight line within a year due to coordination issues and being unable to hear unfamiliar music due to hearing loss eight years later. Some of the other symptoms of Chiari Malformation can include chronic migraines, photosensitivity to bright and/or flashing lights, ringing in the ears, processing issues, trouble speaking, and others. As I mentioned before, Chiari decompression surgery can help people tremendously with symptom management, but it isn’t an instant cure and the scar can still impact head positioning as it can go from the center of the back of the skull to halfway down the neck.
Designing for Intersectional Accessibility Needs
Now there have been lots of conversations in the accessibility field about how to design for blind and low vision users, deaf and hard of hearing users, users with mobility issues, and in recent times, designing for vestibular sensitivities and motion-sensitive users. However, I have found that many of these conversations do not talk about how people may be more than one of these things. A person with Chiari Malformation may live with double and blurry vision that is not corrected by glasses and use a blindness cane, they may need captions for watching a video or following along in class, they may have trouble holding a device or typing for long periods of time, and they might also need to avoid content that contains strobe or flashing lights. The person I just described was me, and I found that there were many times where people would wonder why a person who uses a blindness cane would care if there were flashing lights in content because they assume that anyone who uses a blindness cane has no light perception, or they would wonder why small captions broadcast on a screen were difficult to follow, or why holding a magnification aid up to the board and close to the face could be painful not only for the arm or shoulder but also for the eyes in close proximity to light. Because of this, I love using accessibility settings that consider the intersectional needs of people who may have multiple conditions or symptoms. For me, this includes tools such as adjustable font sizes for devices and for captioning, positioning aids and screen mirroring tools that do not require holding a device for long periods of time, text-based content warnings for things that may include strobe or flashing lights or rapid-moving objects, and screen filter settings that can reduce the white point and reduce the blue light that can contribute to eye strain or alternative color schemes that are high-contrast. All of these settings can benefit people whose only access needs are related to vision loss, hearing loss, mobility issues, or motion sensitivity, but they can make a world of difference for people who have access needs that encompass more than one of these areas- or even all of the above!
Designing for the Unexpected
Another thing to think about when designing for Chiari Malformation is that people may not use the “expected” assistive technology or accessibility settings that people would use for a given disability area. For example, I have low vision and have been asked many times why I do not read Braille even though I can’t read standard print and sometimes go through periods where I have no usable vision- this is due to an unrelated condition which makes my eyes swell shut with certain triggers. While I think Braille is awesome and should absolutely be taught to those who can benefit from it, my Chiari Malformation affects my hands and I do not have sensitivity in my fingertips, which is critical for learning and reading Braille. I also have trouble following along with fast-talking screen readers and can get disoriented when using full-screen magnification as I find that sometimes it can move too quickly. Some professionals in the field of accessibility might wonder how I read then if I can’t use any of the typical tools they would recommend for someone with low vision, or they might incorrectly assume that Chiari Malformation is a condition that can leave you functionally illiterate or relying on others for help. While I do sometimes ask for help with reading, I have found a lot of other tools that work well for me. Across all of my devices, I have the system default font set to be very large, equivalent to about a size 36-point font. I use the built-in zoom shortcut control-plus for reading text in a web browser or use a simplified reading display such as Microsoft Immersive Reader, the iOS Reading View, or the Pocket app to enlarge text and improve formatting and readability. When I do need something read out loud, I use an on-demand screen reader such as select-to-speak on Android, Speak Text on iOS, or the Read Aloud feature in Microsoft applications to read a selected passage of text out loud at what I consider a normal or natural speed- no speed reading here. If I need to magnify something, I use the Lens view of Zoom or Windows Magnifier, which magnifies a set portion of the screen and that is more easily controlled. And when it comes to reading books, I get content from the Bookshare accessible online library and add them to my e-reader so I can read in large print. While it is important to ensure that technology is accessible for Braille users, screen reader users, and screen magnification users, it is also important to acknowledge users that may rely on display scaling or other applications to read text, as well as people who may not need to use a screen reader or screen magnification aid for all of their tasks, only some of them.
Designing for the Unknown
In addition to not using the expected assistive technology or accessibility settings, many people with Chiari Malformation may not realize that there are accessibility-related options available for them, or they might not have even heard of the term assistive technology. Alternatively, they may not have a Chiari Malformation diagnosis and get frustrated with using technology because they feel it is not made for them- after all, the average Chiari patient can have symptoms for 3 to 7 years before a diagnosis is made. I was not diagnosed with Chiari Malformation until I was 18 years old, and I spent the entirety of my high school years dealing with what we referred to as an undiagnosed neurological condition- even though we suspected I had Chiari Malformation at age 14, it did not show up on an MRI until I was 18, so we were unable to get a definite diagnosis until then. Prior to starting college, the main way I got information about accessibility and assistive technology was by reading documentation and articles online about how to configure individual assistive technology settings such as large print, turning off animations, and adjusting device displays. This worked well because I have an interest in learning about assistive technology and strong self-advocacy skills, but I recognize that not everyone wants to or has the ability to spend hours doing research about what would work best for them. For this reason, I would love to see accessibility resources being shared more widely and in the mainstream just like other features of new devices and applications. This might look like having a link to accessibility settings on a product page when buying a new device or downloading an app that talks about increasing the font size, turning on color filters and captions, or using other settings like dark mode. This could be having part of the device set-up process include adding these features and giving users the opportunity to explore the accessibility or ease of access menus. Maybe it would even be having users select ways they would want to make their device easier to use, such as making it easier to read or having ways to open applications with a keyboard, and having the device recommend accessibility settings such as display scaling or creating custom keyboard shortcuts to open applications. This goes back to intersectional needs for accessibility tools, as well as helps to make accessibility settings easier to learn about for people who may not have access to an assistive technology specialist or the knowledge on where to find resources.
Designing for Physical Devices
While I’ve talked a lot about digital accessibility for Chiari Malformation so far, Chiari Malformation also impacts how I interact with and choose physical items and devices. Chronic back and shoulder pain can make it difficult to carry a heavy laptop, books, or a bunch of devices, and poor hand strength or coordination can make holding large-screen cell phones nearly impossible- I don’t want to always have to use two hands to hold my phone, especially if I am dealing with spasms. Other heavy items on my head such as over-ear headphones, heavy jewelry, or headsets can also drastically increase my neck and head pain whether I’ve had decompression surgery or not. I’ve often had to forego having advanced technology features and testing out emerging technology or specialty devices in favor of choosing more lightweight devices that can do multiple things and choose devices that I can easily pick up or carry by myself. Even if they may not have as many of the advanced features, these smaller devices can be a game-changer for those who live with chronic pain or other conditions that make it difficult to use larger devices not only in terms of ergonomic design but also because of cost, living with chronic illness or disability can be expensive! Many of the major technology companies have started to incorporate accessibility features more and more into their devices, and it’s important that people are able to access these features in a way that feels comfortable for them. By having a more accessible design and price point, these smaller and more lightweight designs can make a tremendous difference in the lives of people with disability and chronic illness, as it can allow them to research their symptoms or conditions, meet with specialists for virtual appointments, connect with other people who have similar conditions, and most importantly, help them to be successful and independent with education, employment, and even just enjoyment.
Designing for Accessories
Another part of making sure that physical devices are accessible for people with Chiari Malformation is ensuring that additional accessories and physical tools are compatible with the device, as well as alternative input methods. This can be as simple as having a stand or positioning aid for the device so that the user does not have to bend their head at an uncomfortable angle, or having options for using additional devices such as external keyboards and mice. For me, I use a large print keyboard that has high-contrast keys and has better spacing than the keyboard that came with my computer, and I use it for almost all of my typing related tasks because it is so comfortable to use. Another example is that I can connect my devices to a Google Chromecast and cast them onto a larger display so I can hold my head at a more natural angle and watch videos or look at pictures without having to hold a device in a position that is uncomfortable. It’s also helpful to give users multiple options for entering text, such as using a one-handed keyboard or dictation tools to help with inputting text. While I just use the built-in accessibility features for dictation on my devices, it’s an incredibly helpful tool to have when I don’t want to look at a keyboard or when I am tired at the end of the day.
Designing for Specific Use Cases
Speaking of built-in accessibility features, there are a lot of applications and tools that come pre-installed on devices that can be tremendously helpful for people with Chiari Malformation that you might not necessarily think of as accessibility related. One of the features that comes to mind for me is video chat applications like FaceTime, Messenger, or Google Duo. During the Fall 2019 semester, I had to attend a lot of my classes remotely using FaceTime after my Chiari Malformation symptoms became difficult to manage and I had to move off of campus, which is several hours away. My professors were awesome and also posted recordings of class lectures on the course website that would work with captioning, which was helpful for all students but especially helpful for students who might have had trouble taking notes or following along with in-class examples. FaceTime allowed me to continue to attend my classes whether I was sitting at my desk or sitting in bed, and I was able to continue learning alongside my classmates as well. Another example that comes to mind is virtual assistant devices like the Amazon Echo that can not only tell users what time it is, what the weather is outside, and play music, but they can also help with setting reminders and alarms, creating schedules that can help users structure their day, read text out loud, calling other devices, and even allow users to create their own custom skills using the Amazon Blueprint website. While none of these features were specifically created with accessibility in mind, they are designed so that they can be used without a screen, which is helpful for people who have a migraine and are sensitive to light, and their algorithm has been optimized so that people with speech issues can use the device as well. Even though it may seem odd that a person with a visual impairment would frequently use video chat or someone in the midst of a migraine would want to interact with any form of technology, it’s important to ensure that these types of applications are usable for these groups of people and compatible with assistive technology. In these use cases, it would be beneficial to ensure that video chats can be started and ended with the use of screen readers or dictation to virtual assistants like Siri, Google, and Cortana, and that people would be able to access the video chat interface using large print- which means no contact names being cut off after two letters. For the virtual assistant devices, ensure that the device can be used even if the person is not directly facing the microphone, that the volume can be configured with voice commands as well as buttons, and that customization options are easy to follow. Of course, there is much more to accessibility than just these things, and for those interested in learning more about accessible virtual assistants, there is another talk being given at ID24 on this topic called “Designing Digital Assistants For Those Who Need It Most.”
Designing for Physical Environments
While we’re talking about inclusive design and how it can relate to Chiari Malformation, it’s important to think about it beyond the lens of technology alone. While I know that there are people living with Chiari Malformation symptoms that make it impossible to complete tasks independently outside of the digital world and it’s important to ensure that digital spaces are as inclusive as possible, it’s also important to also ensure that people living with the condition can put away their technology once in a while and be able to access physical environments and buildings as well. For the most part, Chiari Malformation is an invisible illness- unless you have MRI vision, which I imagine would be more powerful than x-ray vision, you would have no idea that someone has Chiari Malformation unless they told you- and even if you did have MRI vision, you wouldn’t be able to predict what symptoms that people do or do not have. While I am very open about living with a disability and chronic illness, not everyone feels comfortable disclosing this information out of fear of being treated differently or discriminated against, which are completely valid concerns. One of the best ways that physical environments can be made accessible for people with Chiari Malformation is by making accessibility available to everyone. For example, instead of requiring users to request special access to get into a building, have accessible entrances clearly labeled and available that include step-free access or use of elevators for people who have difficulty walking upstairs- my college has a dedicated accessibility map with these entrances and routes to buildings clearly marked and it has been an amazingly helpful resource. For stores with physical locations, give customers the option to order items online ahead of time and pick them up either in-store or from their car so that customers do not have to spend lots of time walking, pushing a heavy cart, or navigating obstacles in order to find the products that they need- and when possible, do not charge extra for these services. Ensure that doors can be opened automatically or with a push door button so that people do not need to strain their arms to open a door or wait for somebody to let them in. And whenever possible, make people aware of these services on public building or business listings so that people can know what to expect when they visit this location in person. Again, there is so much more to building accessible environments than just these things, but they are incredibly helpful for people who live with chronic illnesses.
Designing for websites
A lot of the inclusive design principles I mentioned when designing accessible physical environments can and should apply to digital environments as well, including websites. I run a blog called Veronica With Four Eyes, the URL is w w w dot v e r o n i i i i c a dot com, so literally the name Veronica with four I’s, and I have hundreds of posts that are dedicated to topics related to low vision, assistive technology, education, design, and so much more. The first design I ever had for Veronica With Four Eyes left out a ton of critical accessibility features, and it was not actually accessible for anyone who had the conditions that I wanted to write about and spread awareness about. Once I sat down and studied more about web and social media accessibility, I re-designed my website and optimize it for users with disabilities and chronic illnesses, including my own Chiari Malformation so now it looks better than ever. Some of the ways I ensured that my website would accessible specifically for people with Chiari Malformation included eliminating infinite scrolling to decrease vertigo and make pages easier to access, slowing down an image carousel that I didn’t realize moved quickly, using headings to structure posts, improving the contrast of my website so that it could be used by people that use inverted displays or other high contrast themes, adding additional spacing to text to help with improving line tracking and focusing for people that have double vision, and using print disability friendly fonts that are easy to read and don’t require users to strain their eyes in order to identify letters or words. While I do not produce content specifically for social media, it’s more of a platform for me to share things from my website or share posts that other people have made, it’s important that users ensure that their original social media content is accessible for people whenever possible. When making content accessible for someone with Chiari Malformation, helpful items to include are image descriptions that describe what images look like for everyone, not just people who use screen readers to read alt text, as well as including content warnings about flashing/strobing content (or better yet, avoiding this type of content as much as possible), using good contrast in graphics, and captions for video content- I have posts about a majority of these topics on my website. Taking these actions helps to ensure my website is as accessible as possible, and that anyone can learn about low vision and assistive technology in a positive and practical way.
Why Should We Design For Chiari Malformation?
Now all the reasons I’ve mentioned for designing for Chiari Malformation may seem interesting and valid, but there are probably still people wondering why designing for Chiari Malformation specifically is so important. After all, it is not a condition that a lot of people know about, you do not see it being talked about with celebrities or discussed on medical shows or really any media for that matter, and it’s not really considered a life-threatening condition. But the thing is, its symptoms can mimic lots of other medical conditions that are well-known or are even less well known, it can mimic conditions that celebrities are talking about or that appear on medical shows and in other media, and it can mimic conditions that can be life-threatening as well. For example, people who are recovering from a stroke, traumatic brain injury, or who have brain tumors may have double vision and difficulty with reading printed materials and be sensitive to bright lights and displays. People with conditions such as dysautonomia, Ehlers-Danlos syndrome, and issues with tremors may have difficulty with holding objects for long periods of time and find certain devices difficult to carry. And there are so many conditions out there that can involve people living with chronic pain, migraines, and all the other symptoms I mentioned. To design for Chiari Malformation is to make a proactive effort to design for all these other conditions and the people who live with these symptoms without a diagnosis. It’s to create things that can be used by people as their condition progresses or changes over time, or as they get older and can benefit from using accessibility tools even if they aren’t explicitly part of the target audience who uses them. It’s to help show people how to live with a newly diagnosed condition, instead of just handing them a diagnosis and having them try to figure out what it means or how they are supposed to live with it, or if they will be able to achieve their goals. Everyone should design for Chiari Malformation because chances are, everyone knows someone who lives with one or more of the symptoms, or they may live with the symptoms themselves. The greatest act of love that someone can show me from a technology standpoint is to design something that I can use and show that my needs were considered in the design process, and that having too much brain to contain won’t keep me from being able to use the same products and services as everyone else.
I’d like to close this talk out by once again thanking everyone for watching and wanting to learn more about Chiari Malformation and how it can impact the people who live with it. As I mentioned earlier in the talk, I will not be taking questions about specifics of treatment and diagnosis, though I think I do have some time for questions from the audience. If you think of a question to ask me later or if you want to keep in touch, visit me at my website Veronica With Four Eyes dot com, that’s v e r o n i i i i c a dot com. You can also follow me on Twitter and Pinterest at veron4ica, spelled v e r o n the number four i c a, which is a four between the N and I in the name Veronica, or contact me via email at veron4ica at gmail dot com. Thank you all for coming, now let’s get to the questions!
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