This was presented at Confab (May 2020).
A few years ago, I was working on a digital team in a healthcare organization. Our main audience was older adults who had health issues and disabilities. Our organization had a very vocal and public commitment to building an accessible site, having accessible facilities, access for everyone. It was a huge part of the mission. Which was a nice change for me, because for so many places accessibility is an afterthought, or it’s on the priority list but it’s at the bottom and no one really owns it.
The first month I was there, I noticed some things that gave me pause, but I figured: I’m new to this team, this is a different way of working, we’ll see how this plays out. But as time went on, the things that were catching my eye just kept piling up.
- The team was scheduled flat-out, tight deadlines, continuous sprints, with no breaks, and no catch-up sprints.
- Our daily check-in meeting was scheduled from 12-1, directly in the middle of most people’s lunch hour.
- It was not at all unusual for people to work late into the night, or call into meetings on their days off.
- On more than one occasion: team leaders (who are setting the culture!) called in from hospital waiting rooms where family members were having treatment.
People went above-and-beyond all the time, and that was considered dedication – to the job, to our mission, to our patients.
As an organization, we were loud and proud about our commitment to web accessibility, to alt tags and aria roles and screen readers. We really cared about making sure people had access to the website, and we were doing shit-all about the fact that our work culture was deeply ableist.
Most of our work cultures are deeply ableist. Because ableism is a systemic oppression, like racism or classism or sexism. It’s not about an individual behaving badly, it’s about structures that are set up in way that disadvantage huge groups of people. So unless you are putting focused, consistent attention on countering an oppression like ableism, it just gets baked in to the things you build without you even realizing it.
Pause for a second for a couple of definitions:
World Health Organization’s definition of disability as a “mismatch between the features of a person’s body and the features of the environment in which they live.”
I love this definition. I first heard it from Kat Holmes (formerly of Microsoft, and Google, and other impressive places); she wrote a book last year called Mismatch about inclusive design. She’s amazing, it’s amazing. If you’ve ever encountered Kat’s work, you know why I’m gushing. If this is the first time you’re hearing of her: you’re welcome.
What I particularly like about this definition is that it acknowledges that there are multiple factors at play here. So many of the ways we talk about disability are about identifying places where a person falls short (where she can’t hear, or he can’t reach something, something in their body is not working), and this definition says “yeah, there’s a person, and there’s also a context”.
Ableism is the systemic oppression and denial of needs of people with disabilities. Ableism is the way our systems – school systems, government systems, economic systems – declare that there’s one way that the system can function, and that if there’s a mismatch – if the features of your body do not work well with the context of that system – then you just don’t get to be a full part of that system.
“Our office is open-plan. You need to be able to do deep focused work even when there’s movement and noise all around you. If you need a quiet space to work, this isn’t the place for you.”
“This promotion requires that you be on call to answer email on nights and weekends. If you can’t be on call, you can’t have this promotion.”
As if the requirements of the system were written in stone. As if the decisions baked into that system were infallible. Ableism tells us that the system is perfect. The system is correct and unchangeable. So if you want to work in the system, it’s up to you to change your body and life to fit what the system needs.
…I would like to say a swear word right now, but it would not be polite.
Let’s talk about some of the systems that we encounter in our organizations, and the features in those systems that are signs of ableism.
I think it’s really important to name things what they are:
When website accessibility gets deprioritized and ignored, it is often named as as being about usability, brand adherence, or design aesthetics. We don’t often recognize and call out the underlying issue as being a form of ableism, because people who aren’t the targets of ableism are just generally a bit crap at recognizing it when it’s happening.
This is the same as how men can seem astonishingly oblivious to the sexism that’s all around us. And white people, this is exactly how we don’t recognize racism unless it’s standing in front of us wearing a sign.
But, there is good news! You can learn to recognize oppression, even from the non-target side. Many of us know men and white people who are doing so much better than they used to. We can learn and grow.
Let’s talk about some things that look like other things, but are actually expressions of ableism.
Not letting people work from home
This is a funny one to start with, right? But this moment in time is a great illustration of what it looks like, and what’s possible, when able-bodied people decide they need something that disabled people have been asking for for a while.
The vast majority of us are working from home right now. And many organizations were not set up to support this, when it started, they had to scramble to get the equipment and the technology and everything working so people could do their jobs from home.
And you know? Sure, it’s been a bumpy road, there was a learning curve, things had to be adjusted. But teams: figured it out! They changed policies around things like:
- adjusting meetings and planning and general schedules to accommodate childcare
- not just allowing, but encouraging people to take time away if they or a family member was sick
- letting people figure out what working hours worked for them, maybe that meant starting early and taking a longer lunch, maybe it means no meetings after 3pm, people are figuring it out
I’m not saying everyone is doing this perfectly, but many people are experiencing a level of schedule autonomy that they’ve never had before.
Here’s the thing. Some of us have been asking for these kinds of accommodations – to have flexibility in our schedules, to work from home a few days a week – for years. And we were told that we were too needy, and asking for too much. They couldn’t possibly say yes, because it’s a Slippery Slope.
And then a virus pushed us all down the slope, and we figured it out, and we made it work. Which means, that they could have made it work all along. (And probably better and easier, if we had done it in a time when we weren’t also dealing with a global health crisis.)
All those years, when we were asking to adjust the system, because it was a mismatch with the features of our bodies? Denying those requests was ableism. Saying that it couldn’t work, that it was too much change, that the system is sacrosanct, – meetings have to happen in person, we can’t possibly do design collaboration remotely. When they were saying that the people are the ones that have to adapt, that was an expression of ableism.
Emphasis on self-sufficiency
Man, we sure do love a self-starter! People who are self-motivated with a strong independent work ethic, who are able to get things done.
At work this might look like someone wrangling an entire project all on their own. Managing a huge redesign, or owning an entire publishing process, start-to-finish. On the negative side, it can look like power hoarding and refusal to delegate. But it can just as easily be framed very positively, like someone who’s incredibly efficient and just powers through. You can throw any project at them and they’ll figure out how to make it happen. I think we’ve all worked with people (many of us have been the people!) who just get shit done.
And you might think, how is managing a huge project, or getting a ton of stuff done, connected to ableism? When we celebrate self-sufficiency, we demonize the act of asking for help. We create a culture where asking for assistance becomes a sign of weakness.
I will say this again: When we celebrate self-sufficiency, we are creating a culture where asking for help is a sign of weakness.
So many of us have internalized this message.! We get told when we’re little that big kids don’t need help. In a classroom setting, people who ask the teacher a lot of questions are either dumb, or selfish, or both. It’s no wonder that most of us decided it just seemed safer to figure stuff out for ourselves.
But if you’re a person for whom, the features of your body, or the features of your neurology, mean that you would like to ask for help – running an entire publishing process, or managing a redesign, or planning an event – that is a mismatch with this system.
When we foster a work culture where we celebrate and praise people who get things done without ever asking for help, we’re building a system in which many of us cannot thrive. We’re glorifying isolation, and naming collaboration and cooperation as lesser ways of working.
Super URGENT!!!! schedules
Listen, we gotta make those quarterly numbers, we need to launch this redesign before the gala in the fall, this new program needs to get off the ground and be self-sustaining by the end of the calendar year.
We have three days for discovery on this project, the content models needs to be done by Friday, we’re gonna shorten the sprint retrospective to half an hour so we can get started on our next round of work.
why why WHY?? literally why
We lose so much when we work at speed. There’s no time for planning, there’s no time for reflection, or meaningful feedback. Very frequently, the parts of a project that end up getting shaved or cut are the ones that would make the project function better for marginalized users: accessibility work, performance improvements, rewrites to a more reasonable reading level. We don’t have time for that right now – We just have to go and go and go.
This kind of pace? This relentless pushing? I’m going to make a blanket statement here, 100% of us, every single person: this type of scheduling is not compatible with health.
Ditto, also, super long work days, meetings scheduled early morning or well into the evenings, or the assumption that you’ll be checking
email or slack on evenings and weekends, or while you are at a conference.
The expectations around response turnaround time in our organizations are wild. I know people who set out-of-office replies if they’re away for half of an afternoon. Unless you are a literal surgical nurse, or actually at this moment flying an airplane, it’s just not that urgent.
And here’s the thing: no one’s body is OK with this. Long term stress and raised cortisol levels are terrible for you. They start to mess with your neurochemistry, your metabolism, your sleep, your digestion, your immune system.
And for some of us this mismatch is sharp, and severe, and present, right now. We don’t have the option to just push through on an ambitious schedule, to tough it out just for a few weeks until the deadline. Toughing it out means ending up in the hospital.
And for what? So we can launch the redesign before the gala? Come on.
If your project schedules and your general work atmosphere are asking you to perform this kind of self-injury, your team culture is not humane, it is not kind, and it cannot be just. We have to do better.
I have three things I want you to notice:
1) Some of these things sound like other things.
The desire to work from home, for example, for many people is tied to issues around childcare – drop-off, pickups, day care schedules – and because that family labor is disproportionately done by women, denying people the ability to work from home often comes out looking like sexism.
Similarly, self-sufficiency and overwork and intense devotion to arbitrary schedules, those are patterns we see in spaces that are white-dominant, and capitalism-forward. So depending on the context of your organization, these behaviors may feel like ableism, and racism, and classism, all at once.
You are seeing that clearly. They’re all tangled together. And we can’t tease out and fix a single oppressive system, separate from all the rest of them, but sometimes the shift in frame of reference [“ah, this isn’t just sexism, it’s sexism and racism intertwined”] can help us find a new angle and a new approach to addressing the injustice.
2) None of this happens in isolation.
Accessibility work, both on the web and in physical spaces, is always sitting in the tension between “letter of the law” and “spirit of the law”. These are legal requirements, so they’re written out in technical language, and people get so focused on the technical bits that they forget the bigger picture, of providing access to people.
That health care organization I worked with? I was in a bunch of conversations where someone would raise a “spirit of the law” question: should this content be hidden behind a Read More? can we find a simpler way to present this information? And the responses were very often “letter of the law”. “We are meeting the legal requirements. We don’t need to work beyond that.”
I fully believe that ableism in the realms of scheduling, and office layout, and team hierarchy, and calendar strictness, encourages us to collude with ableist practices in our work itself. When we’re in an environment that prioritizes its systems over its people, and when we’re hearing messages that say: the individual the one that need to adapt to the system, that team can’t be doing strong accessibility work. That’s a team that may be able to check off some of the technical boxes of doing web accessibility, but they’ll never be able to build a truly accessible product or service. Until they address the oppressions they’re perpetuating in their own space.
3) Ableism sucks for everyone.
I don’t mean that in an abstract, righteous social justice sense. I mean this very practically: tight project schedules suck for everyone. Workplaces where you can’t ask for help – or even, it’s ok to ask, but people would be really impressed if you did it on your own – they suck for everyone. People who are a mismatch with these systems struggle to even function in them. But no one really thrives here. Because there’s no space to be human! to accommodate bodies, and lives, and families, and breaks.
And this is the key, I think, to making real change here. Fighting for change, not on behalf of your poor disabled colleagues or users, or even beloved family members, but because you’re starting to pay attention to how ableism hurts you, as an able-bodied person. I don’t want your pity, I don’t want you fighting because you like me, and you think I have great ideas. I want you fighting because these systems demean us all.
What should disabled people be doing?
If you’re on the target side of this oppression, and this is a broad category: you may have a permanent disability, or a temporary injury, you may have a chronic health condition, or something occasional like flares of pain. Here’s what I want you to do: take a full breath.
Listen. You’re doing great. These systems are trying to crush you, and you are still here. So here’s what I would like you to do, the next time you run into this shit in your workplace: take care of yourself first. Value yourself above the system.
That may mean naming the ableism in the moment that it happens. It may mean, keeping quiet in the moment, and bringing it up with a trusted ally after the fact. It may mean doing nothing, and choosing not to fight that particular battle on that particular day.
It is not your responsibility to dismantle a system that refuses to see you as fully human. Take care of yourself first.
What should able-bodied people be doing?
If you work for a company that’s large enough to have an HR department, and maybe something like a Diversity, Equity, & Inclusion program or point person, make sure that ableism is a topic that gets attention in the company.
In the tech world, we talk a lot about sexism, some about heterosexism and cisgenderism. If pressed, we will reluctantly talk about racism. But I very rarely see organizations talking about classism, and ableism, as a matter of course, unless someone from the inside pushes for it. So be that person: push for it.
And in fact, just be that person. Do some research, get some facts under your belt, and be the person who brings it up all the time.
In the web accessibility community, it’s a “joke”, that all you need for other people to consider you an expert, is to do an hour of research, and then be the person on your team who keeps bringing up accessibility questions. That’s it! You get some facts, and then make the problem visible.
Thirdlyall, spend some time unlearning your myths. Poke at your own assumptions. When you were a young person, what lessons did you internalize about what “laziness” looks like, and what “lazy” means about a person? What do you think a “successful” person looks like? What do you think a “healthy” person looks like? What parts of those lessons were steeped in ableism, passed down from the adults in your life?
This part, this unlearning, is hard, and scary, and can be really messy, but it’s what has the most potential to move you, and to move the world.
We so often view accessibility work as something that happens on the web, and happens in the realm of checklists. And that’s true, but it’s such a narrow truth. If we want to build more accessible websites, we have to build more accessible teams, and more accessible workplaces.
And you may say “Eileen, I’m here at this conference to learn about information architecture, and editorial calendars, and SEO.” And I get it, I really do, that’s your job. Those things are your job! But that? That’s your job. This? This is the work.
My name is Eileen Webb, I’m a consultant who works with progressive organizations on overall web strategy and information architecture. I also work with the Luna Jiménez Institute for Social Transformation. We do strategic planning, and facilitation, and training for teams who want increase their commitment to justice, equity, diversity, and inclusion. The sessions work surprisingly well with distributed teams and remote facilitation, so if this is an area where your team is feeling stuck and you’d like some help moving forward, come find me. Let’s chat.