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Web Access Club podcast

Learning about disability culture

Season 1 episode 2, -

A big part of UX is understanding our user. But what do people with no disabilities actually know about disability? In this episode, I share how I attempted to understand more about disability, what I’ve learnt, and how they forever changed my views of ‘the disabled’.

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Show notes

A big part of UX is understanding our user. But what do people with no disabilities actually know about disability?

In this episode, I share how I attempted to understand more about disability, what I’ve learnt, and how they forever changed my views of ‘the disabled’.

Places to learn more about disability mentioned in the episode.

Content by web accessibility practitioners:

Accessibility focused practitioners I follow:

Content by disability community:

Transcript

Sawasdee-ka, kia ora and hello.

Welcome to Web Access Club, a podcast about accessibility for web creators. I'm Prae, a New Zealand based UX engineer, who is learning to make accessible web products.

In this episode, I'm going to share what I have learned about disability culture.

When you want to learn about a group of people, the easiest way is to ask a friend who belongs to that group.

Want to understand how Kyudo practitioner think about Japanese archery? Chat with your friends in Kyudo clubs.

Want to know the best way to eat Korean barbecue? Ask your Korean friends.

I wanted to learn more about how disabled people use the web, but here's a problem. I don't have any friends with disabilities or at least not the type that is glaringly obvious to me.

This makes the easy way of learning a little bit tricky. It's harder to empathize with people you hardly know. So, well then what are my options?

Based on the examples I gave earlier, you may be thinking, well, just befriend a disabled person.

Uh, no, I am not rocking up random people because I'm curious about their disability. Even in my head, that sounds like a pretty disrespectful thing to do.

Like any relationship I prefer to get to know the individuals first, before even thinking of asking potentially sensitive questions about how they live their lives. You need to earn people's trust in order to deserve that kind of information. Going into a relationship with an objective like that feels kind of fake.

So, okay then... how about volunteering at services that helps support people with disabilities.

That doesn't really sit right with me personally.

For those who know me, I don't do things by half. If I am in, I'll be very invested for a period of time.

If I was going to volunteer, I wouldn't be able to settle with one hour here and there. I'll think about it constantly, trying to work out how to do it better, and be quite invested in the success of those I support.

For me, volunteering for these human support, types of services needs significant time and emotional investment. Something which I'm still struggling to manage at my work on a day to day basis.

If I'm going to do this, something in my life has got to give. Looking at my personal priorities these days, I'm not willing to give any of them up just yet.

And frankly, I'm not Saint nor my patient. I can already imagine myself snapping at people as I try to help them learn something slowly. It's a huge flaw in my personality that I'm constantly trying to improve. It wouldn't be a great experience for me or for the person I'm trying to help.

Lastly, I was vaguely aware that there are many types of disabilities. Volunteering would only expose me to one type of disability at a time. But I wanted to know about as many types as I could to refine my front-end craft.

So next I tried attending sessions, hosted by groups that teach the public about different types of disabilities. Surely this is next best thing, right? A space geared towards teaching ignorant people like myself, and I'm allowed to ask questions and no one will be offended by that.

With great energy and excitement. I went to an introduction to dyslexia at a local community class, but most people there either actually have dyslexia or are caregivers or people with it. I felt very awkward and pretentious, when we were going around the room and sharing why we're here.

I was the only one there who had no direct involvement with a dyslexic community. It felt as if I was there trying to be the hero to save people, while the reality is I was only there because I was curious and to see if I can further refine my craft. Hearing the worries and concerns from parents in that session made me feel like I was intruding in their world. I never tried to join those kind of community education sessions again.

So I resorted to my last option: consuming as much content about, and by people with disabilities as I could.

Following other web accessibility groups and practitioners

At first, I started with something a little closer to home. I focused on listening to talks and reading blog posts, about making accessible experiences by other word professionals.

Thankfully, these are easy to find if it's in groups that rally around accessibility as a cause, are quite good at making their materials free for the public. Think A11yCamp, A11yTalks, Inclusive Design 24, and A11yTo, just name a few.

If you are an avid podcast listener like I am. I also found that A11y Rules interviews with accessibility, conscious web practitioners has heaps of nuggets and helpful encouragement to continue my journey.

Another one was 13 Letters where people actually discussed assistive technologies and how some of them actually came about.

A11y Project also has a curated list of reading or listening materials from web design and development groups that may not be focused on accessibility, but gave it a spotlight occasionally.

Early in my search, there was a lot of content that focused on why accessibility is important. But since I felt that I'm already sold on the concept, I kept looking for other types of contents that shine a little more light on how disabled people use technology.

Most were focused on visual impairments, like color or complete blindness. Their talks of enabling keyboard interactions with site or screen reader experience at a high level, and there are things like ensuring sufficient color contrast, how screen reader user might navigate the site, or about other less known assistive tools like screen modification.

After a few months though, I started noticing a pattern. I realized that I especially enjoy content by a few practitioners, their content and style really gel with me.

When someone asks, I've always recommended Sara Soueidan to any code conscious people, and then Anna E. Cook, or Shell Little for design conscious people.

With Sara, it was her passion for writing truly meaningful code. She always explains her reason in such a way that is possible for someone else to incorporate her learnings in a way that they code. I've spammed so many front-end and design related conversations with links to her works.

With Shell Little and Anna E. Cook, it was the way they shared the lived experience as an accessibility focused design practitioner, who is also neurodiverse. They made me realize that I really know nothing about people with spectrums of ADHD, autism, dyslexia, or any different way of viewing the world.

They remind me once again of why I'm actually on this part of my journey. I'm here trying to understand more about disabled users, and reading things by web focused advocates. Wouldn't really give me the whole picture.

I need to consume content by people with disabilities. It really is the next best thing to knowing someone with disabilities. And luckily there are also heaps of great resources out.

Listening to the disability community

It took me a while to muster the courage, to listen to Disability Visibility audio, that was recommended to me in a chat thread at work. I know that I could read the book, but these days I prefer to listen to things while doing chores around the house or on a commute to work.

I happily purchased an audio copy and waited for the right mindset to listen to.

The stories of people with disabilities that I heard were enlightening, hopeful, and heartbreaking all at the same time it highlighted systematic barriers for people with disability, their resilience, passions, and longing to be respected.

These stories do not seek to explain or inspire. They just share things as they are for those storytellers. True to the book's name. It is simply trying to make disability visible.

The book acted like adore to learn more about disability community. So I picked up topics from the book that resonates with me. I found myself going down rabbit hole of all sorts of things related to disability like guide dogs, adaptive clothing, mobility, scooters, disability, gaming, and really cool looking but functional walking canes.

I was also ecstatic that Alice Wong has a podcast with the same name. So I dive into those too; there are like hundred something episodes.

Eventually I found three other podcasts that I really enjoyed: Be My Eyes, The Blind Reality, and The Neurodivergent Woman.

Be My Eyes, interviews people with different spectrum of blindness. They talk candidly about their path to independence, joked about some frustrations of their built environment, while reiterating how sighted people can become great allies.

This podcast taught me that there are subgroups within the blind and low vision community, and their needs are all very different. People who are partially blind, may not think of themselves as blind at all, and may not associate themselves with the blind community. They may want to use as much of their vision as possible. Thus opting in to use really, really zoomed in interfaces rather than learning to use screen reader. Assuming that people of all spectrums of blindness are all the same is a very common mistake.

In The Blind Reality, Becki shared her experience as she slips in and out of partial vision. This is a very personal story, and Becki spelled out how she first hated the white cane, how she fears being unable to raise her child and how she eventually accepted blindness as a part of, but not all of her identity.

Becki's podcast also reinforces the idea of independence for disabled person. People with disabilities are capable of doing things. As long as their built environment is not hostile towards them. And that they're taught strategies to navigate the world to live in.

It made me reflect upon the built environment that we have here in New Zealand. The curb cuts the properly done brail bumps, the cafe that let dogs, and thus guide dogs, into their premises, kneeling buses and wheelchair accessible trains.

It is not perfect, of course. Accessible housing is rare, for example; all those stairs with no wheelchair accessible entrances, but compared to Thailand, New Zealand just seems much less disabling for people with disabilities.

The Neurodivergent Woman podcast was one of my most recent discoveries. Monique and Michelle talk through different types of neurodiversity through the lens of their profession; as psychologists and neuropsychologist.

Their podcast seriously made me think about what is considered normal. The line seems so blurry. The needs of some neurodiverse people like quiet spaces, doesn't just help them operate, but also help me focus and gather my thoughts. Online advertisements can be overwhelming and distracting for people with ADHD, but I also find them distracting and annoying.

At some point I came across the concept of ableism.

Understanding perception towards disabled individuals

Growing up, the only time I see disability in the media, was when someone with disability does something that exceeds societal expectation. Even now I vaguely remember the headlines covering some artists without hands, who was using their feet to paint or a blind person graduating university.

I never stopped to wonder, why did they become headlines. Artists with all their limbs, with similar seeming art and output probably won't make the headlines in the same way. And people graduate from university every day. What is so different about a blind person graduating? Why is it that the everyday things that they do is seen as so special?

After going through all of the Disability Visibility, Be My Eyes and a few other disability podcast catalogs, it finally dawned on me.

The society has a shockingly low or no expectation of what someone with disability could do.

On the surface that may not seeing problematic, but expectation is biased and humans acts upon those bias.

Thinking this way means people without disability can simply ignore a segment of the population and continue to create an environment which excludes them. It's the able bodied people thinking that they can't do anything anyway. So creating something for them is seen as chore, an extra. Something out of the ordinary that benefits only an unproductive group of people.

Now I've learned that that is an example of an ableist mindset.

Another example of ableism is assuming that people with disabilities cannot do anything, and then overreact when they found a way to contribute and be independent in the society. These microaggressive behaviors could be saying: someone did this despite of their disability or "you're such an inspiration" to a random wheelchair user buying groceries at a supermarket.

This is unhelpful because contributing citizens with a disability is seen as special. When someone is special, they don't need other people to change, to accommodate them. Others just assume that these people are special, and will work extra hard and rise above the hands I've been dealt with.

Where in reality, if our environment like buildings, technologies, and processes are truly inclusive, any disabled person can find a way to contribute and be independent. After all someone becomes disabled when the environment is disabling to them.

With an inclusive environment, a blind person who codes will no longer be a miracle. And no one would blink an eye at someone with no arms doing some gardening in front of their home.

The worst thing that a society could do is to expect and treat people with disability, like an unproductive member of our society.

These days, I need to constantly check my bias when thinking about someone with disabilities.

Is what they do truly inspirational?

Would I react the same way, if someone, without disability did the same thing?

From my current understanding, people with disabilities do not want to be pitied. Pity is as unhelpful as unfounded admiration. I believe that people with disabilities want independence and to receive a fair treatment.

Disability culture

What I find most fascinating from my research, is the way different parts of the disabilities community think of, and refer to, themselves.

From my observations, people do not want their disability to define who they are. They only want to be associated with their disability community when they want to be, and only when the association is meaningful and fruitful to that relationship.

It was hard to wear my head around this at first. But I understood that it is something to do with identity and how we see ourselves.

Like when I go to web development related events, I'm happy to introduce myself as a UX engineer. I often choose to omit the company I worked in unless asked. But when I'm representing my company at those events, I would add my company's name to myself introduction.

Then when I'm at social gathering, I would introduce myself simply as Prae. Then, I may or may not choose to add that sometimes I paint or do Japanese archery.

The only time I remember actually introducing myself as a Thai female person, is when I'm representing minority in software engineering. When I think about it, this is a very visible part of my identity, but I think so little of it, and I hardly let it define me.

I often choose to opt out a woman in tech narrative due to its association, with women feeling victimized and needed to band together to fight against the male population. I never felt it. And therefore, I don't feel like I belong to that culture.

So I concluded that disability is a culture. Something that people with disability can opt in and out if they want to.

At a party, a blind person can introduce themselves without mentioning how blind they are. That attribute is not relevant at that point in time, but they may be happily disclosing their blindness when applying for a guide dog and training to navigate with one. That may be when they felt it is safe or beneficial to subscribe to the blind culture, which comes with support to gain greater ability to move around independently.

This makes me ever more aware of the hats that everyone wears. We wear different ones in different situations all the time and take them off when we don't need them. Everyone, regardless of abilities should be allowed to do that without being judged.

But some types of disabilities of course, do need extra support, even if our environment has been inclusively designed. All that means is, it is unsafe and unfair to make assumptions about people's abilities.

Reflections

After all that learning about disability culture, inclusive design is both more fascinating and overwhelming. But hey, if it was easy, my colleagues and I would be out of jobs. And plus this is a journey and I can improve bits by bits over time. Surely right?

Even now I don't claim to really know about disability. There's still so much for me to learn; and of course there would be. Disability isn't one group of people. It is one fifth to one fourth of the population. People come in, all sorts of shapes and abilities. My knowledge can only grow from here.

My best advice to everyone who's learning about this, is to keep listening and working with people with disabilities to work through your design challenges when possible.

I do hope that one day, I'll get to make better products with more people with disability. That will give me a much more natural way to understand disabilities better. But for the time being that isn't in my control. All I could do is keep that disabling ableism mindset in check when designing and coding any product.

So now I understand a little bit more about different groups of people that I've been ignorant of most of my career.

I'm going to have to understand the assistive tools they use to access my web products though, so that's coming up in the next episode.

Outro

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