And what you can do to be more inclusive too
I bent over one day and like ink swirling into a glass of water, there it was. A coil of thick, pulsing threats. I didn’t know what it was saying to me, but I knew it was menacing. It’s been three years since a retinal specialist told me I had degenerative retinal disease.
Designing with one eye in 2D is actually not hard. It’s all the stuff around it that accompanies vision loss. It’s the depth perception loss, people assuming you can see them and will give way, being snuck up on accidentally 100 times a day. The Fear is the worst. After six surgeries on the right eye, you start to loose hope that you will see for long. I began feeling clinched with anxiety that one morning I would open my eyes and the good eye will still be swirling with night.
I start to carry a folding white cane with me in my backpack. So I could make it home if I needed to.
I did lose my sight in my left eye and even before I was blind, things became inoperable. February — April felt like the longest three months of my life. Over a month of slowly losing my vision, and then 6 weeks of recovery after surgery. It was my seventh eye surgery but first on this eye. I was lucky, surgery was successful and I just had to take things slow. I went back to work, the first day a complete blur. Mundane was suddenly fantastic.
The reason those three months were so long was not because I was having trouble accepting loosing my vision. I do not think that being disabled makes my life worse or “special” — just different. But I was frustrated by how hard it was to use things that I used before. My experience wasn’t just a learning curve with assistive tech, I learned that with flying colors. There’s not parity in the usability and context of experience for able people and people using assistive technology.
My loved ones and I knew what was coming, so my community really pitched in. The waiting time is pretty long for getting assistance from the NY Commission for the blind, so I just didn’t wait for them.
I share a house with a housemate and a partner, and they helped rearrange and pick up the slack with chores. My partner looked up videos on the internet on how to use the long cane. We found so many ways to help me adapt. There’s a strip of clear packing tape on my table that helped me eat without spilling my water into my plate. Colored sharpie marks on my toothpaste. Written love notes were replaced by sticky notes cut into hearts and stars and hidden on my lunch or drinks. We tried some things that didn’t work, like grippy strips for the stairs that were too rough. Luckily, it was only on one stair and the rest lives on the outside stairs in winter.
We downloaded Be My Eyes, Seeing AI, and learned how to use voiceover. One of the first things I noticed — my continuous glucose monitor app is not accessible or usable by screenreader. My insulin pump, a self contained, self inserting tubeless called the Omnipod — also no audio mode or controls. I was flabbergasted. After calling the company 4 times with no return from the rep, I was furious — how had no one at a diabetes technology supplier thought to design for one of the (now rare) side effects of diabetes? Forgetting situational or temporary disability, someone could have a permanent disability unrelated to diabetes that could leave them visually impaired or blind, but this is also directly related.
As I moved through other apps like Stitcher, who I thought would focus on accessibility since podcasts are such great mediums for audio content, the onboarding flow was horrible. The in-app image alt text for genres and categories just said “selected” or “deselected.” I wasn’t blind at that point, but I couldn’t read it. I had no way or making it big enough or clearer. I had no idea what I was selecting, and something that sighted people do in a manner of seconds, I was excluded from doing by design.
I don’t think any designer wakes up in the morning, laces up their trainers, grabs their DotGrid notebook, and thinks “how can I make someone feel excluded today?” Social exclusion exists in overt, covert, and oblivious ways.
In short, social exclusion is when individuals or groups are blocked from (or denied full access to) various rights, opportunities and resources that are normally available to members of a different group, and which are fundamental to social integration and observance of human rights within that particular group (e.g., housing, employment, healthcare, civic engagement, democratic participation, and due process).
Once your awareness is activated to social exclusion, you can no longer be oblivious. All the tech I held in my hand and the ways I as a digital native connected to community and society was inaccessible. Once I realized that, I was on fire. It wasn’t my style to wait around for someone to fix things for me. I was going back to work, in NYC. I could be the change, and I would start where ever I was and work up and out.
I had already started some UX designer geared courses on accessibility, but I took some geared to developers too, so I could talk to devs about accessibility. So I could sell it. I took a certificate program in Accessibility Program Management (which I finished in June). Assistive tools for vision wasn’t the only thing that ignited me. Cognitive and focus assistive tools, voice control, content writing strategy, all this filled me with spark. How was this not a core part of every design process? It was like feeling a waterfall for the first time, it was overwhelming but I threw my head back and let it roar over me, knowing it will take constant learning to soak it all in.
I have the awesome experience consulting on new accessibility programs and writing policy above just WCAG and Section 508. I test things on screen readers, I advocate for the users that are not represented in user journey, and I work on making complex data more contextualized. I bring my academic knowledge and also my instincts and experiences with vision loss. Right now, I exist in a place where people forget that I have vision loss because most of the time I can accommodate seamlessly. I don’t forget though. All I need to do is turn my head or have trouble adjusting to change in the light to be reminded that my good eye is a medical miracle.
I am absolutely a better designer because I experienced first hand what vision loss can mean for tech and how technology is not designing for everyone. While I don’t think it’s the only way to become aware of and advocate for inclusive design, it is something that continuously gives me insight to my users.
Truly inclusive design doesn’t just pay lip service to tabbing and screen readers. I’ve heard useful, usable, desirable/used tossed about, but if we are making user-directed and centered products, desire/used will take care of itself. It is useful, usable, and understandable that intersect to create an inclusive product. If it’s not usable, it’s not really accessible, so there’s not any need to say “well, you can technically navigate it with a screen reader or voice control interface.”
Putting on a blindfold or earmuffs for an hour or a day won’t emulate the kind of thinking that you need because you can take it off when you are ready to get on public transit or boil water. There is no feeling that you must adapt, limit yourself, grown around constraints. Understanding the struggles of people that use assistive tools takes time and learning.
Just like users not using tools, we have workarounds and things that your could see with fresh eyes. You can really build deep understanding for struggle with exposure. Time, open minds, empathy, and change are the greatest things a designer can offer someone using assistive tools.The best thing that individuals and companies can do is spend time with people using assistive tools. It sounds small to write, but it’s a big ask. Dedicating time costs something. But the costs to humanity are large, and the exclusion gap grows with technology.
Designing for everyone + opportunity = innovation.
Thanks so much for listening to my story.