E078 – Interview with Liz Jackson – Part 1

Liz Jackson says it’s not enough to fix accessibility, people with disabilities must be included. She says: “I think somebody thinks that if they just smooth something out and they make it usable that we won’t have feelings about it. But, we are a people that probably hungers for choice, right? Like, we want to have opinions about things. We want to be delighted. So to simply try and smooth something out and endeavor no further, I think is… we’re missing something.”


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Nic:    Welcome to the accessibility rules podcast. This is episode 78. I’m Nic Steenhout, and I talk with people involved in one way or another with web accessibility. If you’re interested in accessibility hey, this shows for you.

To get today’s show notes or transcript head out to https://a11yrules.com. Thanks to Twilio for sponsoring the transcript for this episode. Twilio connect the world with the leading platform for voice, SMS, and video at Twilio.com.

This week I’m speaking with Liz Jackson. The girl with the purple cane. Thanks for joining me for this conversation around web accessibility, Liz. How are you?

Liz:    I’m good, I’m good. Thanks for having me, Nic.

Nic:    Well thanks for joining me. I know you’re herding a lot of different cats lately. I like to let guests introduce themselves. So, in a brief intro, whose Liz Jackson?

Liz:    So, whose Liz Jackson. I am a disability advocate. I’m somebody who found my way into disability right before my 30th birthday. So, I’ve been a disability advocate for going on 7 years now, and my advocacy has sort of caused me to fall into the design world. And, so, increasingly I’m also starting to see myself as, what I’ve been saying, as a design strategist.

Nic:    Tell me one thing that most people would not know about you.

Liz:    That’s such a hard question. What’s something that people might not know about me. I don’t know if I have an answer for that. I think. I think… the thing that’s coming to mind is this increasingly on the internet and in my work I’ve started phasing myself out of the work so it’s less stories about me and it’s more stories about the work. And so I think right now at this point in time I do sort of wonder if there are ways that I could’ve actually gotten lost in this work. So I’m at a point in my life right now where I’m trying to also separate myself from this in some ways. Because, it’s really easy to get caught up in the day to day, and really figure out what I want to do outside of, what I perceive as, a fight. I’m in the fight. So.

Nic:    Yeah, I have a t-shirt from a guy called Dan Wilkins, I don’t think he makes those shirts anymore, but it says, more or less, ‘there comes a day when even best advocate needs a day off from this stuff.” And, I think separating yourself from the fight is probably a very wise and healthy thing to do.

Liz:    Yeah, I’m actively always looking for things, but it’s interesting because even as I look for things to do, I find myself pushing them away because I… there’s so much now. You fight for so much, and finally, things start to catch on so there are now so many things that I can do, that I’ve been given access to and so I’m trying to achieve that balance.

Nic:    We are talking about web accessibility specifically, but I know… I would like to open that a little bit more because of your personal work in accessibility and advocacy. How would you define accessibility as a whole?

Liz:    How would I define accessibility as a whole? Increasingly I’m seeing accessibility as one half of disability. I think you need really two parts to have… to kind of achieve whatever it is that you’ve set out to do so you need the access, you need people to be able to do the thing that they’ve set out to do but I think the other half is the culture. And, I really look at the culture through the lens of disability studies and so for me, if we were to look at it in terms of study… How is it… if you wanted to have an all-encompassing background in disability, you would need to have equal parts accessibility and equal parts disability culture so you could comfortably navigate between the two.

Nic:    I like that. I don’t think I’ve ever really thought about it that way, but I think it makes a lot of sense.

You were saying you came into disability around your 30th birthday. What’s your personal experience of disability, Liz?

Liz:    It’s complicated. I am… it’s actually through the onset of neuromuscular condition that I actually came to realize that I am somebody who has actually dealt with disability throughout my life. It’s through the navigation of this new illness that I discovered… I’ve had tourettes my whole life and sort of really being able to define it and how it impacted me and so… I talked to… I often times talk to Lawrence Carter-Long about this. He’s somebody who very much identifies as he would say freak and I’m somebody who identifies as sort of always being slightly askew. And, so I think my experience of disability is one whereas I come to educate myself about it. I also come to know myself better and to gain confidence in who I am.

Nic:    Has your experience of disability have an influence on how you think about accessibility?

Liz:    Absolutely, I think about the things that make me the most frustrated, and it’s when something doesn’t quite work for me and just sort of feeling the rage and the frustration. I think I’m very fortunate in that I think so often society tries to tell us that we are the problem. Like there’s something wrong with us. I think I am somebody who is very fortunate that for some reason I’ve never really thought about it that way. For me, it’s been more the case that I’ve seen the outside factor as the problem. And, I think in some ways my feeling about accessibility provide me this kind of looking at this through the lens of ability.

Nic:    That’s profound. I just so love talking with you, Liz. You throw ideas that are really thought-provoking. That’s wonderful.

Liz:    Well, thank you.

Nic:    What kind of hurdles did you find, or meet, when you’re starting to think about this world of accessibility and of culture as well? Disability culture. Did you find barriers? Were there things that were particularly difficult for you?

Liz:    Yeah, I think more than anything, what it comes down to is perceptions. Lately, the thing that I’ve been saying is I want to be able to commit to the friction of my disability. I want to be able to honor the friction of my disability and I think so often we work to accessibility and we sort of envision this smoothing out. Right? That if we just make it usable everybody would be okay but I think things that we don’t necessarily take into account are… you know, when we smooth something out we end up prescribing how something is going to work and how we are either going to communicate or whatever. And so, for me, when I really look at accessibility I sort of endeavor to look at it more complexly. How is it that… like, Shannon Finnigan is… she’s an artist. She’s disabled and she’s been playing around with this idea that alt text is poetry, right? So how is it that you can really kind of, fit something in there that honors the person instead of just seeing their role in this process as one of just being smoothed out.

Nic:    Tell me a little bit more about this concept of friction.

Liz:    Yeah, I think… one thing that I didn’t expect was that as I got into this work I didn’t expect people would take an interest in me speaking publicly. But that has been, for me, a way that I can pursue this work. It allows me to fund the work, and it allows me to get my point of view out into the world. And I can talk about the most recent conference that I spoke at. So, I went on stage and I gave a talk. And, in the talk, I talk about these ideas that I have on empathy. I talked about this idea that maybe it’s not that we always need to be fixed or that we need things fixed but that we just need to be able to be included in the process but also to lead in the process. And I talked about this idea of honoring the friction of my disability. And, I got off the stage and as soon as I walked backstage the conference organizer said to me, you know, in the ten years we’ve been doing this conference that was the best talk we’ve ever had. Right? So, I very much was praised for what I brought to this conference and what happened later on in the conference is I acted on the very thing that I talked about. So, I did the thing that I said. And as soon as I did that, my ideas suddenly seemed a lot less embraced and I sort of felt this coldness, whereas before there was only warmth. And so, for many, I see that I’m really struggling with this idea that people want me to talk about things but they don’t actually want me to do them. And I’m somebody who simply wants to do them.

Nic:    Yeah, it’s fine to get people thinking about accessibility and make them consider things but from there to actually action it seems to be quite a step. Isn’t it?

Liz:    Yeah, well it does, right? I think somebody thinks that if they just smooth something out and they make it usable that we won’t have feelings about it. But, we are a people that probably hungers for choice, right? Like, we want to have opinions about things. We want to be delighted. So to simply try and smooth something out and endeavor no further, I think is… we’re missing something. And so, for me, it’s how can we add culture to accessibility?

Nic:    What’s disability culture?

Liz:    What’s disability culture? It’s, you know, it’s… that’s a good question. Disability culture to me is… I remember I recently said online, and it was actually after this conference. I was kind of thinking of this idea of vulnerability. And, I was saying I might make myself vulnerable or I might become vulnerable at no choice of my own but I’m not somebody who will be vulnerable. I think ‘be vulnerable’ is this mantra that we’re told on… you know, on podcasts there’s the Chris Tedibit podcast and the Oprah Supersoul conversations and I think vulnerability is this thing we are sort of always told is something we need to be and it’s never made sense to me. But, remember that as I was thinking, as I got back to New York from the conference and the next day I had gone to… there’s another… there are a few disabled people that I really am attached to here in New York City, one of them is Chancy Fleet who is the accessibility coordinator for the New York public library and she was hosting this event and there was a bunch of disabled people there, and, I remember I just went into the room and I walked in there and I saw a few friends that are very active in the disability community and I remember I just felt… I teared up, I just felt so safe. I felt I was with people who would understand the discomfort that I had gone through and I just felt understood. Right? So, what is the disability culture? It’s the solace that we take in each other so that we can nourish each other and go back out into the world and do the work that we are committed to doing. I think that’s the best definition I have of disability culture.

Nic:    Playing devils advocate here, several years ago I wrote an article called ‘Disability Community? What disability community?’ Where I was talking about the differences between the group where there’s seemingly a hierarchy if you’re a quadriplegic you’re better than someone whose paraplegic. If you’re totally blind you’re better than if you only have low vision and this kind of concept where there’s a lot of disability groups that are pitting each other against other disability groups. And, I’d like to throw this at you in terms of… Is there a single disability culture? Or are the cultures so different between disability groups that it makes for a fragmented experience that would be really hard to reconcile from one to another.

Liz:    Yeah, I think this something everybody in… that is… everybody who is very active in the disability space, we don’t call it a disability community but somebody who’s trying to work and create progress in this space. I think there are these very tangible, very visceral ways that we do bump up against each other and it’s uncomfortable. I think a lot about the pecking order of disability, right? It’s almost like the more visible your needs are the more likely your needs are… like, nobodies getting their needs met but the more visible the need the more likely you’re about to come close to getting your needs met. I was talking to somebody who’s long been active in national adapt recently and I’ve sort of long seen National Adapt, like the guy in my team there, their fight for bus lifts on busses. That… this idea of a bus lift came to me more than any sort of one community. It was sort of like this object that regardless of whether or not you needed a bus lift, if you were active in the disability space in the late 60’s / early 70’s this was something that everybody came together and they sort of valiantly fought for. And, I was actually wondering to him if we exist in a time where, yes, we have various needs and we have various things that we’re trying to accomplish but I actually do wonder if straws in the straw ban have actually become that for us now. And, that, maybe we’re not always going to be able to come together on things but maybe from time to time there are objects and there are goals that regardless of our need of that object or that goal we will support one another. And, so, I guess if we are looking at modern overarching disability community, for me, the question is ‘Okay, well who’s been concerned about the straw ban’? And maybe that could be an identifier for us.

Nic:    Yeah. I accept that.

Liz:    It’s the best I have. I think this is something we’re all grappling with but there are those moments and when we do find ourselves in those spaces it does feel good and so, what if we pay attention to those little things where we can hopefully assume it feels good for many, many people.

Nic:    Yeah. I like the idea of trying to find similarities and shared experiences rather than try to fragment people with disabilities more. Because, I mean, we’re about 25% of the US population so if we came together rather than bickering we could actually have quite a bit of power here.

Liz:    Yeah. I think it’s interesting. I myself participate in some of the bickerings. And, this is another question of mine is, I think in any given community there are people who will bicker simply out of frustration without actually having a goal in mind and then there are others who are engaging in these fights but they have something very specific that they’re working towards. And, so, for me, I think well how in these battles do we start to delineate ‘Okay, maybe there’s something of substance here.Like, maybe this person’s actually trying to say more and maybe we’re missing something’.

Nic:    Hmm

Liz:    And so I think I’m trying to figure out, okay, when is it that one persons trying to know another person down versus when is it that one person’s actually really trying to say something.

Nic:    What’s your favorite word?

Liz:    Right now I decided my word of 2019 is ‘usurp’.

Nic:    Okay. Why?

Liz:    So, this idea of usurping. So, for me, it’s… I remember I was talking to this guy who’s a… he’s an entrepreneur and he talks… he often times sort of talks to various companies about entrepreneurship. And, as of late, increasingly charities are approaching him and they’re asking him… I’m sorry, not charities but philanthropists are approaching him and they’re asking him. ‘ How do we get more bang for our buck?’ Or ‘How is it that we can assure ourselves that the money that we are giving to charities is being used effectively?’ and what he was saying to them is, well, what he was telling me was is that, he says the same thing to philanthropy after philanthropy and that is that there’s only one way for them to assure themselves that they’re getting the most bang for their buck and that is.. Is that they give a certain amount of money to a charity based on an individual served. So say they decide each individual is worth $100 and 100 individuals are served then that’s $10,000. Right? And they would get that amount of money. But he says no philanthropist has ever been willing to do this ‘coz no charity will do it. And he never understood why no charity would do it and I was like, ‘what you don’t understand is that the second that the people who are being served realize that there is an amount they can get per person the people who are being served will actually usurp the charities and will find out how to fund themselves and we will no longer need the middleman.’ And, so for me this idea of usurping is like, how can we simply stop being a population that is served and really start driving our conversations and our needs. And so that’s… I think it’s something I’ve been thinking deeply about.

Nic:    Does that tie into this motto ‘nothing about me without me’?

Liz:    Yeah. I think it very much does. I think I found my way into that motto in a little bit of a different way. And, the thing that I saw is… when I first started thinking about design the thing that I quickly started realizing why is that there are people in this world who have changed the world through designs simply through the lens of their disability. Right? So I talk about Stephen Farffler created the many moated carriage which was the first self-propelled wheelchair and it’s the precursor to the modern-day bicycle. Wayne Westerman created the iPhone touch screen. And so… Ralph Teedar and cruise control. And so you have these ways in which disabled people are incredibly genius and so it struck me as interesting that given our proclivity to innervation the phrase is designed for disability. If you Google design for disability you’ll see that it yields more than twice as many search results as disability design. And, I find that really frustrating because I felt this idea that we are recipients of design had embedded itself into our language even though it’s actually not the reality. We are actually drivers of design. And so, for me, it evolved into ‘design with disabilities’… sort of design for disability and through a friend of mine, Alex Haggard, they really now honed in on the phrase ‘disability led design.’ And so, yeah, I think, I think it took me an evolution to get to ‘nothing about us without us’ but I am fundamentally there and it’s… I think it’s the core of my thinking and of my work right now.

Nic:    Let’s finish this week with the question, what would you think your greatest achievement is in terms of web accessibility?

Liz:     It’s complicated. I think I’m on the cusp of a couple of ideas but I don’t think that I would look at anything and sort of say I have achieved anything yet. And I think that the reason why I’m a little bit hesitant to say that I’ve achieved anything is because… and this is actually an idea that I sort of have around accessibility where right now the way accessibility is treated in design is you frame a problem and then you come up with a solution. And then, once you’ve come up with a solution then that’s the end of the story. And so, for me, I’m really interested in… okay, like… every other format and every other form of design is a progression or an evolution and so how is it that accessibility/web accessibility evolves. And so, I think we could look at something as simple as alt text, sorry. Right, so I started out and I didn’t even know what alt text was. Right? So that’s like, my entry into this space. I had a WordPress website to go with purplecane.com and I didn’t even know what alt text was. And so my captions were written in the caption space below the image and I … somewhere along the lines I learned that ‘oh, okay, that caption also needs to go in the alt text box’ And then I realized, now they’re being told twice. And so, like… and then you start to get playful with it. Okay well, now you have this box where you can communicate so what can I say that’s really interesting or amusing and I’ve reached this point now where I think I sort of see the alt text box as a sort of a wink. What is it that I can say in here that only people who use screen readers will be able to access that everybody else misses out on. And so, I think for me, I really kind of like to look at the progression of my thinking and how it was sort of… it went from something that I didn’t even know existed to something that I felt that I needed to do to this point where I’m like, oh, I can only reach certain people and I can have fun with this. And so, I think if anything it’s like, how do we start to show other people like, okay let’s have fun with this.

Nic:    I like that idea. That’s a wonderful thought to finish this week on. Let’s have fun with this.

Liz Jackson, thank you for being such a great sport and we will talk to you next week!

Liz:    Perfect, I can’t wait.

Nic:    Thanks for listening. Quick reminder, the transcript for this and all other shows are available on the show’s website at https://a11yrules.com Big shoutout to my sponsors and my patrons. Without your support, I couldn’t not continue to do the show. Do visit patreon.com/steenhout if you want to support the accessibility rules podcast. Thank you.