Season 1 Episode 9 Jul 1, 2020

How to Develop for Neurodiversity and Universal Design

Pitch

We talk neurodivergence, algorithmic bias, universal design, and accessibility with Heidi Waterhouse, senior developer advocate at LaunchDarkly, and Lydia X.Z. Brown, Policy Counsel for the Privacy and Data Project at the Center for Democracy and Technology, and Adjunct Professor for Georgetown University's Disability Studies Program.

Description

There are a lot of ways that the tech world is failing when it comes to employing and developing for those who are neurodivergent. We speak with Heidi Waterhouse, senior developer advocate at LaunchDarkly, and Lydia X.Z. Brown, Policy Counsel for the Privacy and Data Project at the Center for Democracy and Technology, and Adjunct Professor for Georgetown University's Disability Studies Program, about neuraldiversity and what tech could be doing better when it comes to universal design and accessibility.

Hosts

Ben Halpern

Ben Halpern is co-founder and webmaster of DEV.

Jess Lee

Jess Lee is co-founder of DEV.

Guests

Lydia X. Z. Brown

Lydia X. Z. Brown is an advocate, organizer, strategist, educator, writer, and attorney working for disability justice and liberation. For over a decade, their work has focused on building solidarity-based communities and addressing the root causes of interpersonal and state violence targeting disabled people, especially those at the intersections of race, class, gender, sexuality, and violence.

Heidi Waterhouse

Heidi is an experienced professional communicator deeply invested in getting information to people who need it in the easiest way for everyone involved. Sometimes that involves public speaking, blog posts, and technical writing, but at one point she had a lively cutlery-based description of full-disk encryption. She has realized that the best way to scale her philosophy of simple and empathic communication is to teach others, so she is working on a book on technical writing for developers and other reluctant technologists.

Show Notes

Audio file size

66100720

Duration

00:45:58

Transcript

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[00:01:26] LB: What people miss about universal design is that it isn’t about making something perfectly accessible for everybody, but it’s about building multimodality in for everyone.

 

[00:01:48] BH: Welcome to Dev Discuss, the show where we cover the burning topics that impact all our lives as developers. I’m Ben Halpern, co-founder of Dev.

 

[00:01:56] JL: And I’m Jess Lee, also a co-founder of Dev. Today, we’re talking about neurodivergence with Heidi Waterhouse, Senior Developer Advocate at LaunchDarkly, and Lydia X. Z. Brown, Policy Counsel for the Privacy and Data Project at the Center for Democracy and Technology and Adjunct Professor for Georgetown University’s Disability Studies Program. Thank you both so much for being here today.

 

[00:02:17] HW: Thank you for having us.

 

[00:02:18] LB: Thank you so much for inviting us to be here today.

 

[00:02:20] BH: Heidi, can you tell us a little bit about your work background?

 

[00:02:25] HW: I am a developer advocate for LaunchDarkly and this is my first developer advocate position after 20 years as a technical writer working for a large number of companies on technical writing and basically being an interface between humans and developers.

 

[00:02:41] JL: How did you get into the type of work that you do now?

 

[00:02:44] HW: I applied for a technical writing job at LaunchDarkly and they looked at my history of conference presentations and said, “So, do you know what a developer advocate is?” And I was curious and they’re like, “We think you’re actually secretly a developer advocate. Oh, would you like to change your career?” And I thought, “Why not?” That’s how I ended up in a career where I go to conferences and talk to developers about the things that they hate and then try to make them better.

 

[00:03:13] BH: And Lydia, how about your work background?

 

[00:03:15] LB: For over a decade, I’ve been an advocate and organizer and an educator in disability rights and disability justice. I’ve worked in policy advocacy. I’ve done a lot of community building and cultural work. I founded and direct the Fund for Community Reparations for Autistic People of Color’s Interdependence, Survival, and Empowerment. And most recently, I’ve been teaching for Georgetown University’s Disability Studies Program and I teach on intersections of disability, race, queerness, and sexuality, and among others. And right now, I’ve just started work at the Center for Democracy and Technology where I’m building on work that I’d started in the fall in addressing issues of algorithmic bias and fairness that affect disabled people from an approach of algorithmic justice. And essentially what that means for me is thinking through questions of not just is something fair, but if it’s fair in a fundamentally unjust system, how do we remove that system rather than simply accepting it as a given? So I don’t tend to like using the language of algorithmic fairness just for that reason. I don’t want things to be fair under white supremacy and ableism. I want white supremacy and ableism to be disappeared and for us to work toward justice.

 

[00:04:35] BH: What steps did you take to get into this current position? It seems like something that would take a lot of career pathing to get to where you are now. How long have you been interested in this field specifically?

 

[00:04:47] LB: I believe from a very young age that every single person has a moral obligation to use whatever resources we have at our disposal to fight and challenge injustice, oppression, and violence in all of their forms. And what resources of course is different from person to person and the resources that somebody has access to will fluctuate over the course of their lives from resources in terms of time, money, skills, knowledge, emotional energy, physical capacity, space, social connections. All of these things are resources and what resources somebody has passed what they need to live a minimally comfortable life for themselves will always change, but whatever resources a person has passed that point, I’ve always believed we have a very strong moral obligation to use those resources to redistribute unfairly acquired and gained resources, to challenge systems of power and domination so that we can ultimately work to end them and to build a more just society. And I believe that since I was a very small child. And throughout my lifetime, I’ve done my best to try to live up to that. I became involved with disability work specifically beginning in high school and there wasn’t a specific incident or an inciting cause that resulted in, yes, I’m going to do disability work. But for me as a multiply disabled person in community with many other multiple disabled people, many of us experiencing several forms of marginalization, in addition to being disabled, is always been very personal for me to say that whatever ways in which we survive and resist ableism are shaped by our lives, living and existing in a world that is not designed with us in mind and that in fact would rather that we not exist at all within it. Well, that means that there’s always something for us to be fighting against and it was never a question of will you fight, but rather, how will you fight?

 

[00:06:49] JL: So Heidi, now that your full-time work revolves around speaking, I know that you’re known for a great talk titled “I Have ADD, And so can - Ooh shiny!” across a lot of different tech conferences. Can you tell us a bit about what that talk is about?

 

[00:07:04] HW: I wrote this talk because I am a person who got a late in life ADD diagnosis. Like many people who are parents, the process of getting my child diagnosed was revelatory for me because as I was filling out this checklist for my child, I was like, “What I do that? Oh, that’s me to… no, that’s what my life is like.” And I ended up going and getting my own diagnosis. And the doctor who diagnosed me said yes, that frequently they will see parents come in after getting their child diagnosed because they had never realized what was wrong with them. And as I dove into doing some research and understanding what was going on, I became more and more fascinated with the fact that there is an atypical ADD presentation that happens a lot to very bright women or people who identify as women. And one of the hallmarks is like if you know a brilliant woman who is doing a ton of things and it’s just like the center of all of these amazing thoughts and also she can’t find her car keys, there’s a possibility that she is a person who is struggling with neurodiversity.

 

[00:08:19] JL: Let’s define the concept of neurodivergence before we go any further.

 

[00:08:23] HW: So when I talk about neurodiversity, I think that it is important to me as a person to understand that my brain is not wrong or broken. It is a poor fit for some of the things that society expects. This is sort of the social model of disability. But if I accept that all of the things that make my brain really bad about remembering to call the garbage company or pay my bills or do boring tasks are also the things that make me a really synesthetic thinker and make it possible for me to empathize really strongly with people in a lot of different walks of life. Neurodiversity means that our brains aren’t all the same. They don’t react all the same. They’re not all going to be alike, but that doesn’t mean that they aren’t all valuable, that the ways we differ from “norm” may be more valuable than detrimental depending on how society treats us. And so when I talk about neurodiversity, that’s a wide umbrella term that includes people with mental illness. It includes people with executive function problems. It includes people when they want to be included on the autism spectrum. It includes basically anybody whose brain is not a good fit for what we expect.

 

[00:09:47] LB: When we talk about neurodiversity, we’re really referring to two different things at the same time. One of them is the biological reality that all people on the planet do not have identical brains. People’s brains function differently. People learn differently. People sense differently. People communicate receptively and expressively differently. People form relationships differently. And in society, because of ableism, we treat some configurations of how brains work as normal, healthy, and sane and intelligent. And we treat other configurations of how brains work as defective, deficient, or broken. For me, I’m very intentional about the language that I use. Neurodiversity is both the reality that we all have different brains and it’s the philosophy of accepting and affirming all types of brains and particularly uplifting those of neurodivergent people. And neurodivergent people cross a wide span of disabled categories and Heidi named a number of them, psych disabled people, learning disabled people, developmentally disabled people, people with intellectual disabilities or cognitive or neurological disabilities. And the terminology around neurodiversity as an idea and neurodivergence as a person’s experience was rooted in the autistic community, but it doesn’t mean only autism and autistic people. It means all of us whose minds and brains are treated as less than insufficient or wrong under a system of ableism.

 

[00:11:21] HW: There’s so much to unpack about the very idea of neurodiversity and gendered presentation and differential diagnosis based on race and perceived gender. The thing about the talk that I give is that it’s such a surprise. I have yet to give this talk where I didn’t, after the talk, have someone come up to me in tears because they have been told their whole lives that they’re very smart and if they just tried harder, they would be able to do this work or they’re very smart and it’s very disappointing that they’re not doing it the right way. And they have internalized this shame and negative self-talk so strongly that to have somebody say to them, “Maybe it’s not your willpower that’s failing you. Maybe there is something about you that is not broken but different.” And I love this talk and I love giving it and it’s exhausting because every time it comes with this aftermath of emotional support, as I walk people through this discovery that they’re not flawed humans, they’re just humans.

 

[00:12:35] BH: So we’re here today on a software development podcast. And I’d like to ask first, Heidi, what you think the tech industry as a whole could do better to nurture and be more accessible to those who are neurodivergent?

 

[00:12:52] HW: So I think the tech industry as a whole is actually better at this than many industries, which is not to say, great, let’s be clear, but better, because we do have some sort of personas or mental models for people who are “really good at code and bad at people”. Well, they may not be bad at people. They may be bad at trivial coworker interactions that don’t seem meaningful to them. So we have some models for neurodivergent behavior where you can still be a valued human in the team. One of the things that I really want tech to do is to consider that there are different disability axes. And like Lydia said, many people with disabilities are multiply disabled. So I think what the tech industry needs to do is think about the fact that people using their tools aren’t all the same and they may have different and conflicting support needs. So for instance, the page that you would give to somebody who needs non-mouse control, like keyboard control is different from the page that you would give to somebody who’s using tablet control with low accuracy touch. So when we’re building things, I think we need to not break HTML. HTML is a beautiful standard because it’s semantic. It says, “This is what a thing means and how you present it is immaterial to how the information is structured.” But every time we make a page pretty by putting dibs in, we break the semantic structure and we make it less accessible for people who are using it in ways that we can’t understand or see because there are so many awesome disability tools that allow people to access the web if it’s not broken. There are screen readers and there are high contrast viewers and like there’s so much that we could do if we don’t break it.

 

[00:14:48] BH: I think it’s interesting to touch on the idea that the software community generally has a decent model of neurodivergence, but would you say it’s maybe an overly simplistic model and doesn’t account for edge cases, so they say, or even really common cases that are just not as obvious in the models?

 

[00:15:09] HW: Oh, absolutely. For instance, I think we do okay with developers who are on the medium to low verbal end of the spectrum, but we don’t do well with people who need really high stimulus, who can’t sit through a meeting without bouncing, who are always looking for sensory stimulus. We don’t accept that very well. We don’t understand that somebody can be listening to you and music at the same time. I think that it’s not so much that we have edge cases that we have entire unexplored areas. I really think this is coming up in the pandemic where people can both make an environment that suits them. But if they’re the kind of person who needs people to bounce off of to be really effective, they’re really isolated and it’s really tough. I have a coworker who’s an out loud person thinker. Like it’s just the way he thinks and it’s great and it works wonderfully and he’s very bright, but without somebody to bounce ideas off of, he just sort of spins in a circle and it’s really difficult for him to be isolated at home.

 

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[00:17:32] JL: Lydia, what are some ways that you feel like the tech industry is falling short in terms of accessibility to those who are neurodivergent?

 

[00:17:39] LB: Many people seem to approach accessibility and access as a checklist or even on a linear continuum from it’s either not very accessible, sometimes kind of accessible or we’ve made it, now things are accessible. And the reality is access doesn’t work like that. Access is messy. It’s complicated and it’s fluid. And not even just in the ways that Heidi is alluding to that what one person needs may be completely at odds with what another person needs, regardless of whether those people are disabled in a particular way or not disabled at all. But even if you take the population of disabled people at large or narrow that down to disabled people who are one or more kinds of neurodivergent, what someone needs to feel supported, to feel comfortable, to feel safe and to feel functional may change for themselves for their own body and mind over the course of a single day, let alone over the course of weeks or months or years. And it’s very hard for many people in the tech industry in particular and just in general in society to account for that when they’re not approaching it from an access centered and disability justice perspective because a lot of folks like to think, “Well, if I can just code to make sure that my program is maximally accessible to people using screen readers or to people who were using eye tracking software rather than a mousepad, then I’ve achieved things, it’s accessible, it’s fine, and I don’t have to do anything else. And the reality is that what people need changes over time and changes from moment to moment and not being able to exercise choice both in terms of technologies that you might be using on your own in private, but also not being able to exercise autonomy over your workspace when you work alongside other people means that you aren’t able to devise the kind of environment that is actually supportive because you can’t do that on your own. You can’t do that without the help and support of those who are around you in order to ensure that you continue receiving whatever support it is that you need to feel at your best. And you can’t attempt to design access as one size fits all. The principle of universal design, a lot of people misunderstand. They misunderstand it as meaning you can design something, a workplace or an app that is accessible to everyone, but that’s not what universal design is because one particular thing will never be accessible to literally every person and to literally every person at literally every time. An open floor plan workspace is amazing for certain groups of neurodivergent people and an actual literal nightmare for other groups of neurodivergent people. So if your workspace says, “Well, our workspace is an open floor plan,” that doesn’t work for everyone. It works wonderful for some people. It works terribly for others. And the example of the worker that Heidi mentioned having a completely distributed workforce where no one shares space with each other at any time would be really hard for someone like the person that Heidi mentioned. It’s not that it’s necessarily insurmountable, but that mode of work is amazingly accessible for many other neurodivergent and disabled people for particular reasons and inaccessible for others. And so for me, I always think of access as a process. One that is fluid and one that is holistic. And in looking at where the tech industry can often go wrong is that there’s a mindset, especially in tech, that people have that if we can code our way out of something, then we can fix it and it will be solved. And there are things that you cannot code for. There are things that you can’t design for because it’s an iterative and constantly fluid process.

 

[00:21:35] HW: I’d like to add on to what Lydia said about universal design that we have this checklist and we feel like it is a thing we do for disabled people. There’s a really great infographic that shows temporary and permanent disabilities, like maybe you broke your arm and can only use one hand and maybe you don’t have two hands and you can’t use two hands. And this is the thing that I love about universal design is that the more time we spend on opening that access up to as many people as possible, the more convenient it becomes for everybody. This is the curb cuts example. This was an enormous watershed moment for disability rights activists when they started getting curb cuts and sidewalks so that you could get a wheelchair up and down. But I think about this not every time, but a lot of times as I’m dragging a wheeled suitcase around and I can use curb cuts instead of having to drop my suitcase off a curb all the time. I’m like, “This is what universal design is about. We’ve made the world better for everyone by adding as much access as possible.”

 

[00:22:40] LB: What people miss about universal design is that it isn’t about making something perfectly accessible for everybody, but it’s about building multimodality in for everyone so that there are as many ways to engage, participate, and move in a space as possible, so that we can hope that every person has a means of access rather than attempting to design for an imagined group of, “Here’s the group of people that if we just designed for it’s now accessible.”

 

[00:23:10] BH: Thanks a lot. I feel like this really covers a lot of topics, which are inherent to the entire developer experience, and then everything developers ultimately do to build for everyone. And these are the sorts of topics that are kind of inherently nonlinear. They can’t necessarily be built into our continuous integration and tested in an automated way. Heidi, how would you say developers tend to fall short in thinking about it in those terms and developing models that account for cases which just don’t bake into the automation we use?

 

[00:23:54] HW: When we talk about how difficult it is for a developer to occupy this sort of liminal space where you would need to be to understand this multimodal access, I think about my very first startup job where we all had extremely fancy like 19-inch monitors, which tells you precisely when this was, with really high resolution and all of the designers were under 30 and they came up with this gray on gray with gray sauce background, which looked extremely modern at the time but was just be complete failure in terms of like high contrast accessibility. And I said, “Are we doing any test for that?” And they’re like, “Well, the user is the test. It wasn’t even agile. This is XP. We’ll release it and we’ll get feedback.” And I’m like, “We’re not going to get feedback from people who can’t use it initially.” So when we’re thinking about our personas, the people that we’re designing for, I think although there is no like prototypical this one disabled user needs exactly this, I think it is useful to peg it at, “Is this meeting contrast requirements set by the US government and the web standards boards in 1994 or is it not?” A linter is not going to catch your logic errors in code, but it’s at least going to catch obvious stuff. And so we need, as a base level, an accessibility linter. Are your headings actually readable? Do you have alt text on your images?  Is an image the only way you can access this? So I think for automation, yeah, we can have sort of a very rudimentary linter system. But I think for actual universal design and access, we need to hire experts and they need to come in and teach all of us, not just product development, but also sales and product management and everybody about how to ask the questions. How could we make that more modular? How could we make that more easy to break apart? How can we make that serve okay in a degraded internet environment?

 

[00:26:09] JL: So since we’re on the topic of building actual products and how we approach that, Lydia, can you tell us more about the work that you do on algorithmic fairness and bias and just a little bit more like what that means and how that can be applied?

 

[00:26:25] LB: We’re looking at the ways in which algorithmic decision making or algorithmic assessments end up harming disabled people individually as well as systematically. And naturally, that also means understanding and helping other people to understand the value systems that shape that harm. So when an algorithm routinely weeds out every person with a psych disability in a hiring process because of personality tests analyzed by computer, that derives out of a societal belief that psych disabled people are not trustworthy, are not responsible, are not competent, are not safe, and are incapable of fulfilling basic job responsibilities. When an algorithm is attempting to detect fraud in people who receive public benefits like food stamps, unemployment, or Medicaid, and it automatically begins weeding out large numbers of disabled, low-income people of color, it’s based upon societal values and presumptions about which type of people deserve support and assistance and which people are instead takers and burdens and undeserving, which people are lazy and irresponsible, which people are liars, which people are untrustworthy and which people deserve to be left in destitution and impoverishment deliberately. When algorithms are making decisions about which members of a college campus’s community are likely to pose a threat of committing an act of mass violence, like a mass shooting. The algorithms are based upon assumptions that it’s possible to tell which kinds of people based upon behavior or language used are going to turn violent. And most of those assumptions are rooted in deeply ableist ideas that someone who is “crazy” is probably someone who’s going to commit an act of violence and someone who’s not going to feel guilty about committing an act of violence. Algorithms that are used in processes that affect disabled people’s lives are always going to exist in a world that is profoundly ableist for as long as we have ableism. And what we’re looking at in our project work is how disabled people and other advocates that care about disabled people’s lives can fight back against dangerous and harmful algorithms, whether through increase in regulation, through advocating against the deployment of algorithms altogether in particular contexts or through empowering disabled people and others to develop systems and processes that don’t rely upon, not just automation that could be fundamentally unfair and unjust, but on ableist ideas and presumptions about disabled people to begin with.

 

[00:29:15] JL: I’m sure many of our listeners right now are thinking about how they can be more aware of these biases that they could be writing. Do you have any advice for just your day-to-day developer whose primary job function is not focused on accessibility?

 

[00:29:37] LB: My number one piece of advice to everybody is that you can’t be building something without consulting disabled people in the process. Even if the thing you’re building is not meant primarily for disabled people or not meant primarily for a disability related purpose, disabled people are among your users and disabled people are undoubtedly among somewhere else on the development team.

 

[00:30:02] HW: I’d like to add onto that, that in your teams, you need to be careful to not be like, “Hey, you Bill, you seem to have a really weird brain. You’re now volunteered to be on the disability committee.” Just because somebody is a person with a disability, it doesn’t necessarily mean that they want to do disability advocacy.

 

[00:30:20] LB: Correct. And just because someone is disabled doesn’t mean that they actually have expertise. So I’m suggesting that folks collaborate with disabled developers who are thinking on issues of disability, because they have the technological expertise to contribute and to participate in a development process. They have personal experience and they’ve worked past that personal experience as well where disability is something they are regularly thinking about rather than simply happening to be part of their existence.

 

[00:30:52] JL: I want to go back to Heidi, your example of your coworker, who’s currently struggling with remote work. Dev has been a totally distributed company for quite a while now and now many companies are due to COVID, can you talk about the type of issues that those with ADD or those who have other neurodivergents have, in the context of remote work and just anything that you feel like employers should be aware of as we go through this together?

 

[00:31:20] HW: So there’s a common joke going around about how we don’t know what day of the week it is anymore because we’ve lost all of our milestones of going to work and changing into like hard pants and things like that. But I think it’s one of those funny, not funny ha-ha things for people with ADD, many of whom have trouble sensing the passage of time. It’s one of the diagnostic symptoms is, can you tell whether or not time has passed when you’re in hyper-focus? So one of the things that happens is like you get in a loop about like the world is ending and COVID is terrible and you lose hours to that, but could theoretically have been worked time or conversely you’re working and there isn’t an external signal to you, like your coworker doesn’t get up to catch the bus and all of a sudden it’s dark and you’re very hungry and you don’t know how long you’ve been working. As a manager, I think that would be super concerning because it’s really easy to burn people out that way. And then there’s also the problem of how do you deal with the fact that like I have twice as many remote meetings as I did before, I have always been a distributed employee for this company, but now that everybody is distributed, we’re going to have all of our meetings on Zoom. And somehow my life is hell. They’re all spaced about 90 minutes apart. So just when I’m starting to get back into my flow and be able to work and accomplish something, it’s time to sort of ratchet down and get ready for another meeting. I find that super aggravating and difficult because meetings are important to me, talking to people is part of my job, but also I can’t get any deep work done because of everybody’s need to connect. So I think it’s really going to be useful for companies to set aside meeting days and actually respect them. And having these rituals over the week is going to help everybody sort of ground in time.

 

[00:33:21] LB: I also have obsessive compulsive disorder on top of general anxiety. And as a person with obsessive compulsive disorder, it has been a little surreal watching pretty much the rest of society begin to develop an experience, some symptoms that seem light, what we’ve had for our entire lives. And in some ways, it’s actually disheartening for me because it is, well, now everybody else suddenly is experiencing something so now it gets to be real and something that people take seriously and are talking about resilience and mental health and how to support people around. But when it’s just us with OCD that are experiencing it, we are written off, de-legitimized, not offered support or only subjected to pathologization. What a lot of people don’t realize is that while the rest of the world has begun to experience a type of anxiety and a type of response to that anxiety that mirrors what many of us have lifelong OCD have always experienced, we’ve had it in this amplified way since the beginning of the pandemic, especially those of us who have health and contamination related OCD and it has not been a pleasant time. Even worse than that too, a lot of people trivialize the experience of OCD and I have been hearing a lot of really bad takes from people saying, “Oh, well, now is the time that people with OCD can shine. The people with OCD are like the best equipped to handle this.” And I’m like, “The people with OCD are on the verge of mental breakdown,” because we are now being told that all the things we’ve been working on in therapy to try to address and to work on not letting completely take over our lives and every waking thought that we’ve been practicing working on rationalizing some of it and working on not acting on some of it. Well, now the whole world is saying, “Actually your worst fear scenario is that you have the obsessive thoughts over are actually true and actually happening.” And that is not good for us.

 

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[00:36:51] BH: Now we’re going to move to a segment where we look at responses from you, the audience, responses that have come into a question we asked relating to the topic of this episode.

 

[00:37:01] JL: The question we asked you all this week was, “What can the tech industry do to better accommodate neurodiversity?”

 

[00:37:08] BH: Jennifer responded, “I think increasing the flexibility and allowing for increased autonomy accommodates neurodiversity diversity well. For example, flexibility in what time a person chooses to work and how they work remotely or in an office, allowing a person to choose what works for them and to figure out what routine and work style for most of the most productivity. Another thing to accommodate neurodiversity is having multiple avenues of communication. Some people understand texts faster when some people understand verbal communication and vice versa. So opting for all avenues of communication when reasonable helps all kinds of people be accommodated.”

 

[00:37:46] LB: I certainly agree with Jennifer that giving someone maximum flexibility and autonomy to figure out how they work best is incredibly helpful for many people, but the option should always be there to ask for and receive support from a supervisor or manager or somebody in HR, if they don’t feel comfortable going to the supervisor directly, to experiment with different structures of modalities because some people like me and others that I know function best left to our own devices. But other people that I know really need external structure and don’t know how to ask for it. And they need that external structure even to figure out if a particular time of day works for them or does a particular time of day not work for them. So giving someone the option, not just to set and choose how they work and how they function, but also the option to reach out to and receive ongoing support in figuring that out for themselves would be very important from my point of view.

 

[00:38:46] HW: I would say that, yes, I think that would be useful, but I also think it doesn’t have to do with disability status. I think when you treat professionals like professionals who can get their work done, you get better work out of them. I’ve been really appalled by the number of news articles about organizations installing spyware that watches everything you’re doing on your work computer and takes webcam shots of what you’re doing. That kind of treatment is antithetical to any kind of creative work because if you’re constantly aware of being observed, that’s a huge process that you’re running all the time and it makes it very difficult to get any work done. So more autonomy, I think, is pretty much always a great option. If you do have the option to say, “Okay, actually I need some support. I need some structure,” me personally, if you don’t ask me what I’m doing every week, I can lose like a month of spinning my wheels. So I think it’s important that people be able to set up with their managers what’s going to work for them.

 

[00:39:54] LP: Fluffy wrote in, “Not requiring people to call in for support is a big one. A lot of neurodiversity expresses itself in the form of being uncomfortable with having to, for example, call a phone number and speak extemporaneously.”

 

[00:40:07] LB: That’s so common for people with anxiety, with trauma-related disability for autistic people that having to get on the phone is awful. It’s something that many of us will avoid forever. So I really wish that more sites would make available options. You can call or you can live chat with somebody. Pick one and either way, please, for the love of all that is holy on this green Earth, give me a human.

 

[00:40:38] BH: Gabrielle writes, “I think first of all, education. My company does seminars on the topic so that more and more people are aware of first of all what it means. Gotta start somewhere.”

 

[00:40:49] HW: I think this is actually a great idea. My brother works for a large company that has a neurodiversity ERG employee resource group and it is a place where employees of the company can come talk to each other about neurodiversity and brainstorm and work together. But also because it exists, they’re doing outreach to say, “Hey, if your brain works this way, maybe you fall under this umbrella. Would you like to be included?”

 

[00:41:15] LB: Yes, a company should do more education for hiring people, for managers and generally for employees, but, and at the same time, just providing education by itself does not by any means eradicate ableism. The ways that many companies operate just to begin with if by focusing on a bottom line sometimes more than by focusing on the wellbeing of the employees and the wellbeing of the other people who may be using or benefiting from their projects can be harmful no matter how many trainings you offer on here or different types of neurodivergence, here are some ways that neurodivergence can manifest in people. By all means, talk about that. I do those trainings sometimes, but it’s not going to solve the problem in the long run or in the big picture.

 

[00:42:06] JL: Do either of you have any parting words for our audience?

 

[00:42:10] HW: I just want to say that if you’re listening to this and feeling weird and away about it, and you don’t know what you’re feeling, that’s okay and you don’t need to know right away, but all of us think that you are valuable the way you are.

 

[00:42:26] LB: If you’re listening to this and you’re wondering why does this even matter in a world where we all might die because of COVID-19 and isn’t some of this just annoying politically correct bullshit, I would offer to you no matter who you are, you’ve been affected and harmed by ableism in some form because ableism teaches all of us that we constantly have to prove that we deserve to be treated as human. And that the way to prove that is often through proving that we can be productive, proving that we can be functional, proving that we can be independent, proving that we can be intelligent. And no matter who you are, no matter where you come from, we’ve all felt the harm of those pressures on us. And for many people never more so than right now when we are literally facing millions of people dying because of COVID-19, we’re still being expected to be productive, to show up, to do work, to turn in products. We’re still being expected for the students to perform, to get good grades, to be able to obtain some fellowship or some grant. You’re being expected to somehow prove that even through whatever is happening, whether you’re a frontline worker or someone with the privilege to work at home that you are functioning, that you are excelling, that you are working, and that’s not sustainable for any single one of us. It’s not. And the work that I’ve done rooted in disability justice asks and offers us an opportunity, not just to be compassionate with or kind or tender to ourselves, but to also see the work of creating opportunities for rest, opportunities to receive care, to receive kindness, to receive tenderness, to receive love from one another in the communities that we are a part of, no matter what those communities are or how they’re defined, as part of what it means to create justice and to get to freedom to a world where we don’t have to live with the structures of ableism anymore. So what that means for you is that we can give ourselves permission to acknowledge that we are going through a collective trauma right now, but it is hard and that you do not have to be productive in order to count as human.

 

[00:44:50] JL: Lydia and Heidi, thank you both so much for being here today.

 

[00:44:53] HW: You’re welcome and thank you for asking us on to talk about this. I think the more we talk about, the beautiful multiplicity of humans, the more people can find a place to fit themselves.

 

[00:45:03] LB: I deeply appreciate the conversation we’ve had today, and I hope that we can continue to have many more in the future.

 

[00:45:18] JL: I want to thank everyone who sent in responses. For all of you listening, please be on the lookout for our next question. We’d especially love it if you would dial into our Google Voice. The number is +1 (929) 500-1513 or you can email us a voice memo so we can hear your responses in your own beautiful voices. This show is produced and mixed by Levi Sharpe. Editorial oversight by Peter Frank and Saron Yitbarek. Our theme song is by Slow Biz. If you have any questions or comments, please email [email protected] and make sure to join our Dev Discuss Twitter chats on Tuesdays at 9:00 PM Eastern, or if you want to start your own discussion, write a post on Dev using the #discuss. Please rate and subscribe to this show on Apple Podcasts.