MATT MULLENWEG: Howdy howdy. Welcome to the Distributed podcast. I’m your host, Matt Mullenweg.
Today’s guest is Lydia X. Z. Brown, who is a… well, Lydia wears many, many hats — we’ll get to that in a minute. Lydia once gave a talk for Automattic about disability inclusion, and today we’re going to continue that conversation.
Lydia spent much of their life feeling left out, and they’ve dedicated their career to advocating for marginalized folks of all kinds. As the CEO of a distributed company, I’m curious to know more about how we can make the hundreds of Automatticians across the world more comfortable at work, and I know Lydia will have some insightful thoughts to share about that.
Okay. Let’s get started.
MATT MULLENWEG: Hy Lydia.
LYDIA X. Z. BROWN: Hi Matt. Thank you so much for having me on your podcast.
MATT: You are a multi-hyphenate. It says here you’re a writer-advocate-organizer-strategist-educator-speaker and attorney. How did all those things come to be for you?
LYDIA: I have believed from a very young age that every single one of us has a moral obligation to use whatever resources we have — time, money, knowledge, skills, emotional energy, access to physical resources — however that might be defined — that we each have a moral obligation to use those resources in service of justice, and fighting against injustice and oppression and violence in all of its forms, structural and individual, subtle and overt.
And since the time I was young, in grade school up through high school and now as an adult, I have done that. And I have been enormously privileged in many ways, although I frequently talk about experiencing marginalization in others, I have an enormous amount of privilege and I have experienced some of that in terms of access to some resources. And for me that makes the journey quite natural and quite intuitive. It wasn’t so much that I chose “I’m going to be this thing, I’m going to be an advocate, I’m going to be an educator,” so much as I have to. I have an obligation to, and I have the skills necessary to develop, so that I can be successful in doing it.
MATT: There is so much injustice in the world. How did you pick the areas that you focus on?
LYDIA: The work that I do is deeply personal to me. I am a multiply-disabled person. Most people who know about my work primarily know me from the autistic community. And not only am I autistic but I also live with psychosocial disabilities and other cognitive disabilities. And not only do I move through the world as a disabled, neurodivergent person, but I also move through the world as a queer person and as an openly non-binary trans person, and as an East Asian person of color living in the U.S.
And all of those experiences of marginalization, and what some of us might say is hyper-marginalization, people who live at the margins of the margins where there is so much that is stacked against us, and how society is designed, and who society assumes is normal and healthy and the ideal, and who society decides shouldn’t really be at the center, shouldn’t be in the lead, should be denied opportunities, should not have access and all of those things, it gives you a very different perspective than when you grow up in the world with access to more privilege and resources in ways that I didn’t, even in the many ways that I have had some privileges.
And for me, going through school, targeted all the time as a freak — that was one of the most common refrains of my grade school and middle school bullies — and making it to high school, where I was falsely accused of planning a school shooting because of stereotypes and stigma about people like me.
MATT: Oh wow.
LYDIA: And then making it through college and law school, where you would think that people might have a more egalitarian approach. Well, that’s laughable because sometimes the people that are in what are supposed to be the most progressive kind of spaces — forward-thinking, innovative — sometimes were the most damaging and the most harmful precisely because they already believed that they were incapable of inflicting such harm.
And moving through those spaces, constantly receiving the message that I didn’t belong, and at the same time that I couldn’t speak for or alongside or even in support of other hyper-marginalized communities, because, well you do have this privilege — it gives you a fire.
MATT: How do you develop empathy for someone whose lived experience is different from your own?
LYDIA: For me it starts with recognizing firstly our shared humanity and secondly believing deeply in and being passionate about a commitment to valuing all people and all configurations of people’s lives and experiences, and how their bodies and minds work, whether they are like mine or unlike mine.
And if we all start at that premise, that every single human is valuable for who they are in all of their complexities, in their many identities and experiences, not in spite of them, because we are not the same and that’s a good and okay thing, but as all of the things that they are, then we can recognize that even if we don’t understand intellectually or emotionally what another person’s experience is, it doesn’t mean that it’s not valuable or that they’re not valuable as a person, or that that experience or part of their identity somehow detracts from their personhood.
MATT: Can you tell us a little bit about what you’re working on today?
LYDIA: Right now I’ve been working on developing a project called The Fund for Community Reparations for Autistic People of Color’s Interdependence, Survival and Empowerment. We call it the Autistic People of Color Fund for short.
I launched the fund last summer, 2018, using some award money that I had received from a disability rights organization, as well as the proceeds of “All the Weight of Our Dreams,” the anthology that I edited, along with two other folks — Morénike Giwa Onaiwu and E. Ashkenazy — featuring 61 writers and artists of color who are all autistic. And we used those proceeds and that award money to seed a fund that provides micro-grants to individual autistic people of color as a form of direct support and mutual aid.
The fund so far has given out over $12,000 in funds in grants of between $50 to $500 each to people from a variety of countries, as young as toddlers and as old as our elders, to help them with everything from accessing mental healthcare to covering a shortage in rent money, to escaping an abusive situation, to buying textbooks for school or art supplies or posters for a protest, and everything in between.
And that project, every several months is reinvigorated with donations from our community because we’re always running low on funds. So something that I’m working on today and this week is hoping to gain more sustainable and long-term sources of funding for the fund because right now we are in a place where the vast majority of our donations are small gifts from individual community members, many of whom are low-income or no-income, who are disproportionately unemployed or underemployed or have only precarious access to financial stability rather than having general access.
Every time I open my inbox, there’s anywhere from five to 25 emails from people who are seeking to apply for money through the fund. And we never have enough money to meet the need because our community is facing so much. And when you are negatively racialized and autistic — and most of the applicants to the fund have many other experiences of marginalization on top of that — the likelihood that you’re facing circumstances that are far beyond your control in terms of access to healthcare, access to safe, affordable and accessible housing, or simply being able to live and enjoy your life, go on vacation, see a movie is just so difficult and so hard to grasp.
And that’s something that I’m hoping we can begin to change. I know we already have with what we’ve done but it’s also not enough.
MATT: If people listening wanted to support this organization, where could they go to donate?
LYDIA: You can donate funds to the Autistic People of Color Fund by sending a check, money order, or PayPal payment to the Autistic Women and Non-Binary Network, AWN. If you donate to AWN, you’ll need to include a note that it goes to the Autistic People of Color Fund and they’ll include it in our budget.
MATT: Great, thank you. What’s your current work environment like?
LYDIA: My current work environment is in a traditional office location in downtown Washington, D.C. As an attorney, I work as a fellow for the Bazelon Center for Mental Health Law. In our offices there are 12 floors, there’s different law firms and organizations, legal and non-legal, who all share the same building. And in our office space, Bazelon is the primary leaseholder for this very large office suite.
We have seven staff currently here and we also have three other organizations, one law firm, and two nonprofit organizations that sublet space from us. So we all share this large office suite together in D.C. I’m sitting in an office right now where I have a very nice lamp that I got to replace the horrible fluorescent lights, I have a door that shuts and it’s wonderful because when I need alone time I can shut the door and when I need social time I can walk outside the door and say “Hello, my fellow workers, we all exist here, who would like coffee?”
MATT: Tell me about how traditional co-located office experiences are like for different kinds of disabled people.
LYDIA: For some disabled people, having a traditional co-located office space is a boon. It’s a boon to mental health because it enables and provides and a built-in way to connect with and share space with other humans. People were built to be in community, that is how we evolved, evolutionarily speaking, if we want to go to basic biology. And that’s true even for those of us like me who are more introverted.
People were built to be in community. And if we don’t have access to other people in our daily experiences and throughout our lifetimes we can end up living lives of enforced isolation, and that can be especially true for many disabled people, whether it’s someone who is physically disabled or whether it’s somebody who has mental disabilities or both.
Having access to a workplace where we can actually see other people, potentially have the opportunity to build social and professional networks, can be great for that reason. It can also be helpful in that if the workplace itself offers features of the building design and of the space design itself, the office layout, that maximizes access for a particular employee, it can make workflows occur better. It can make it more efficient, it can make it more easy to complete. It can enable the employee ultimately to feel better about the work that they are doing and to produce higher-quality work.
So there are a lot of potential benefits to having this type of office location. There are also, of course, downsides. And of course there are many potential configurations to these kinds of offices in the first place.
So here where I am, for the most part, we each have separate offices with separate doors. And for some folks like me that works great. Like I said, it enables me both to have privacy and to be able to work alone when I need to be alone and focus, but it also enables me to connect with others by choosing when to keep my door open and shut and choosing when to move in and out of this office space that was designated for me.
Other people who are in a co-located office location may prefer to have more of an open-office layout where there are multiple desks or workspaces that are not really separated or only have partial walls or partial dividers. It enables that same kind of ratio of having a bit of a dedicated workspace for you but also supports and enables more open conversation and collaboration with people who are physically present with you. Or to give what my partner Shain will often talk about as having a kind of ambient people existing where we’re all existing in the same space and that’s comforting in a way but it’s also not creating an obligation or a necessity to have to engage in conversation if that would be distracting or unhelpful to your workflow.
MATT: How should people think about physical disabilities versus neuro–atypical folks in regards to office environments?
LYDIA: Everyone is different, whether you are neurodivergent or physically disabled or both. And many people are both, all the time. Your needs are never going to be the same as anyone else’s, just like people who are not disabled. There are no two people who function best in the exact same type of environment.
Where disability comes into the picture is thinking about how someone’s body or mind might function best in an environment, a built environment or an emotional or communicative environment or infrastructure that perhaps wasn’t designed to begin with with that particular person’s bodily capacity or neurodivergence in mind when that design was first conceptualized and then implemented.
So when people ask me how do we then design a workplace that best fits people with physical disabilities versus best fits neurodivergent people, my response is [that] there is no one size fits all. So for example, in the autistic community, there are some autistic people who I know who need to have daily access to natural sunlight, and quite a lot of it, in order to function well. And if the room is closed off and there’s no windows or there’s very few of them, and it’s only artificial lighting, that can make it incredibly difficult to function, let alone to get work done.
And at the same time, I know many other autistic people for whom the sunlight is actually physically extremely painful and being around sunlight is emotionally draining, it is sensory overstimulating, and it physically just hurts.
Obviously those two needs are by definition incompatible. Those two people, one from each of those groups, cannot share a workspace in the same room because either one of them is very well supported and is functioning very well with that type of lighting, whichever one is there, and the other one is miserable and/or in pain. For me the question isn’t so much, “How do we design a workplace or one methodology of supporting employees in terms of infrastructure,” as it is “How do we make sure that each person that is involved with our company or our organization or our community is able to access the type of environment and space that works best for them.”
MATT: A lot of people listening here will be at or running fully–distributed companies where there is not a physical co-location place. What should people in those environments keep in mind when designing how they interact with their colleagues?
LYDIA: For the people who need to function best having more constant communication, having access to other people around them who are working or certain forms of scaffolded support from their manager, it can be hard to do that in a distributed way.
So, for example, with some people who have ADD or depression, it can be very difficult to manage one’s own workflow, which some people might say, “Well that’s a prerequisite. If you want to work for a company that has a distributed workforce, you need to be able to self-manage your time, you need to be able to self-manage your workflow prioritization, you need to be able to self-manage how you initiate tasks and follow through on tasks and insure completion. And if you can’t do that, maybe this isn’t the right workplace for you.”
And my response to that would be perhaps for some people that may be true, there may be some people who already know about themselves from their own experience that that’s not going to work for them, so those people are probably not in your workforce if that’s where you are. They might be and if they are I sincerely and genuinely hope for their sake that they are able to find an opportunity that they are excited about that will support them in excelling in an environment that they would need for them.
But for people who aren’t at that point where it’s actually an impossibility and completely inaccessible but who would struggle with the lack of formal and physical access to structure that would traditionally come with a co-located office, my suggestions would be to always go to the employee first.
If you believe that someone might be struggling with their workflow management, or they’re struggling just in general with their job, or they have already told you, “I’m really excited about this, this has been going great, however I’m beginning to have some issues and I want to make sure we intervene before those issues worsen and affect my work and affect my performance on this team,” it’s for you to ask them, “What things work well for you, what things don’t, and how can I support you in getting the things that work well?”
So, for example, if someone in a distributed company says that they need to be able to be around other people at least during part of the day to get work done, but all your employees are in different locations, then it might be worthwhile for that company to invest in paying the membership of a co-working space for that employee so that they have access to a location that has some of the features of an office — it’s a workspace, people are primarily there to do work, there might be some desks and a printer, so it can feel more like a workspace than your home or a cafe might — but it also enables that person to stay where they are and doesn’t require the company to make that investment in horrifically expensive real estate, and for a workforce that is primarily not in one location and in fact may have, at most, perhaps five employees in one location, and they don’t want to share a space together.
For somebody else it may be not so much, “I need a physical space,” but “I need to be able to have regular access to my manager, to be able to have conversations throughout the day.” In a distributed work environment, it’s not that that’s not possible, you of course already know that’s very possible, but it may be working with that employee to figure out [if] Slack work[s] for [them]. And if it’s not working for you, if it’s not meeting your need to be able to pop in and ask your manager questions throughout the day, then what are the other possible interfaces for communication modality that might meet that need instead?
MATT: It seems like this could require a big degree of self-awareness. How do people find out if they need certain environments like you describe?
LYDIA: Some people are able to figure it out better than others. And you’re definitely right that to be able to express and articulate what you need and what works well for you often requires a level of self-awareness that unfortunately not everybody has. But this is where good management and good team-building comes in.
An effective manager in a distributed work environment needs to develop the skill of asking precise and information-gathering questions to elicit this kind of information. Because even if the employee might not be able to produce this information on their own, or might know it, but not necessarily know how to communicate it in a way that would be applicable and useful in a work environment, an effective manager or an effective supervisor should be able to develop the skill of asking, “Okay, so in your last work environment, let’s talk about the setup of your office.”
Like you asked me, “Was this a good setup for you or not? What were things that you liked about it, what were things that you didn’t like about it? What was frustrating for you? What excited you when you came to work? Can you describe a time when you were really productive? What changes, if any, were made at any point during your time during this other work environment?” Or if they haven’t had a work experience, perhaps when they were in school or perhaps in some group that they volunteered with or they were part of in their community, whether it was their softball team or whether it was crochet, whatever it might be.
It’s taking some of the kinds of questions that we might ask someone either in an assessment or an evaluation and/or in a job interview, but asking them with an eye to detail, being open-ended but also narrowly defined enough to capture the kind of information that will help the supervisor, the manager, and any HR support staff in figuring out how to then apply that information into the person’s current workplace.
MATT: How common is it for people to be neurodivergent but not realize it themselves?
LYDIA: I don’t have statistics on that and part of the reason I don’t is because by definition it would be incredibly difficult to capture a number or a percentage of how many people are objectively determined to likely be some type of neurodivergent versus how many people know that about themselves.
But what I can tell you, based on anecdote and experience in working with thousands of different neurodivergent people over the last decade, is that it’s very common for people to know that they learn in a different way than others, whether that’s in a way that got them labeled stupid or in a way that got them labeled gifted.
And it’s also very common for people to have received some type of label of disability or giftedness, or both, even if that specific label might turn out to be inaccurate, but it captured some aspect of their neurodivergence that somebody observed that this person didn’t fit into the mold of what society assumes is typical of how to learn and communicate and process and deal with emotion and all of those things that make our messy stuff in our brains.
There are folks that discovered they were neurodivergent when they were in their teens, whether or not they had language for it. And there are also people who didn’t realize it until their forties, fifties, sixties, and even seventies. I’ve met some people in their seventies and eighties who figured it out at that late stage in their life.
And it tells you a lot about us as a society of how we simultaneously assume that you don’t really count as disabled or neurodivergent if it’s not affecting you in a way that we treat you horribly over. “Well you must have functioned fine.” They probably didn’t, they were just very good at trying to hide it when they weren’t. Or that we say we knew about it so we labeled you all kinds of derogatory and terrible things, we recommended you for institutionalization, we assumed that you would never be able to make your own decisions, never be able to choose and form your own relationships, anything like that.
And either way, neurodivergent and other disabled people will find ourselves in the double bind of being expected to overcome and mask being disabled for the comfort and convenience of non-disabled people or of being assumed that we will never amount to anything by any definition, that we are completely incompetent, that we are incapable, that we don’t belong and that we shouldn’t belong. And it’s always one or the other.
But really they boil down to the same kind of ableism and that ableism is the devaluing of disabled people’s experience, that to live life as a disabled person of any kind means that we’re living a lesser life. But the reality is, is that disabled people have so much to offer ourselves, our own communities and the entire rest of the world because we have lived our entire lives learning how to function and survive and sometimes, when we’re lucky, to thrive in a world that was literally designed not for us.
MATT: I have heard of workplaces that actually target and try to hire disabled people. What are some of the superpowers that those companies might be trying to benefit from that people might not appreciate?
LYDIA: You know, it’s really interesting every time we talk about disability-targeted hiring initiatives for me because there’s a lot of cognitive dissonance. On the one hand, many of us appreciate that there are companies out there that are trying to seek out more of us to hire us, recognizing that we actually do have talents and capacities individually and perhaps to some extent there may be some patterns of some talents among some people, at least sometimes. And that’s great, especially given the astronomical rates of un- and underemployment for disabled people, especially those of psychosocial, intellectual, and developmental disabilities.
But at the same time something that really worries me in many conversations around employment and corporate hiring initiatives are that many hiring managers creating these programs will say things like “We love having disabled employees because they’re so motivated, they show up to work every single day, they never call out sick, we can depend on them, they’ll be loyal to our company forever.”
And you know, at the surface level, when you don’t really think about that too deeply that sounds great. Like, yeah, that means that disabled employees tend to be really dedicated, we should hire more disabled people. But what that says to me is actually that because of our astronomical rates of un- and underemployment, we have become sometimes an exploited labor force.
Where there are some companies that mean well, they’re not necessarily doing this out of malice, but they are aware at least on some subconscious level that it’s more risky for many disabled employees to call out more. That it’s more risky for us to do anything but excel far above and beyond what our non-disabled peers need to do in order to make sure that [we] keep [our] jobs.
And that makes me really sad and it makes me really angry. Because I don’t think we should be hiring disabled either because of stereotypes that might or might not be true, e.g., that all autistic people are savants at math or that all blind people are prodigies at music, when sure, some are. There are some autistic people I know who are math geniuses and there are some blind people I know who are incredible musicians and there’s also plenty of us that aren’t. Like, I’m autistic and I suck at math. Also I’m Asian so I just broke two stereotypes at once, which is fun. [laughter]
We all have different skill sets and they may or may not be tied at all to our disability but we should be hiring people based on whether that person is going to be able to do the job and do it well, disabled or not. And we should be hiring people because we want them and we believe that they belong in our workplace, we want to support them in being part of that workplace, and as being more than a person who simply does a job but as someone who belongs to the community of people in this workplace. That’s what we want to do.
And so if the question is, “What are superpowers that we bring?” My answer is, how about we not talk about superpowers but we talk about why each and every single one of us deserves to be able to do work in a way that’s meaningful, that makes sense, that makes us feel good, that is not doing something horribly unethical, hopefully, and that at the end of the day enables us to be able to live in a system that unfortunately isn’t really set up for most of us to thrive?
MATT: Let’s talk about why — why people deserve to have that.
LYDIA: I believe very firmly that every single person deserves to be able to live in a safe community and to be able to live a self-determined life and to be able to live authentically and true to themselves and to be able to live as part of a community where they can receive care, they can receive support, they can receive love, and they can feel a sense of belonging.
And I believe that that is inherent to human dignity. It should never have to be earned. Somebody should not have to earn the right to live without fear of violence. Someone shouldn’t have to earn the right to be able to afford safe and accessible housing. Nobody should have to earn the right to be able to receive healthcare.
And unfortunately in the society that we live in our society presumes that those are things that need to be earned and that if we don’t think someone is contributing enough or we don’t think that they are productive enough, that maybe they don’t really deserve those things. And if we’re nice, maybe we’ll give it to them, at least a little bit or at least for part of the time, but until and if and when society says, “Oh, you’re pulling your own weight, we think it’s contingent and we think it’s conditional.” And that to me is incredibly inhumane and unjust.
MATT: As a wrap–up, was there anything we missed that you wanted to talk about?
LYDIA: I just think it’s important to note that when we’re talking about employment and disability, I believe that the corporate sector has an opportunity to take leadership in fighting for fair and living pay for people with disabilities. Many people don’t know that it is still 100% legal in the United States and in many other countries around the world to pay people with disabilities pennies on the hour or the equivalent.
LYDIA: In the U.S. it’s emblazoned into federal law, in section 14(c) of the 1938 Fair Labor & Standards Act. Section 14(c) is still on the books today and there are many for-profit and not-for-profit organizations that take advantage of section 14(c) to pay disabled people as low as cents per hour for menial labor and it’s 100 percent legal. And this is horrific.
There is a bill before the Congress right now called the Raise the Wage Act, which, if passed, would eliminate the use of what’s called sub-minimum wage in the U.S. And that’s pretty awful that such a concept exists. If it’s minimum, there is supposed to be nothing below it. But in the U.S. we call it sub-minimum wage.
There are other nations in which there are no labor protections at all for people with disabilities, either in terms of non-discrimination or wage protections. And while I’m not an expert on international labor law, what I do know is that companies around the world, all of the folks that are listening here, have an opportunity not only to prioritize and speak publicly on ensuring that you’re paying folks a living wage and a fair wage that is not based upon backward notions of productivity, but also to fight for the end of sub-minimum wage and other unfair labor practices that devalue disabled people’s work even more.
MATT: If people want to follow you more, where can they find you online?
LYDIA: You can find me on Facebook under the name Lydia X. Z. Brown — Autistic Hoya. And you can also find me on Twitter @autistichoya. All one word. My home page is autistichoya.net. And my blog is autistichoya.com. That should really be reversed but that would require a type of web engineering that I am not capable of doing alone. [laughter]
MATT: Well I’m also very honored that you use WordPress for many if not all of your websites.
LYDIA: I use WordPress for almost all of my websites and I love it.
MATT: Awesome, I very much appreciate that. Finally I will mention as well what you said earlier. Autismandrace.com, which is where they can donate to the project and fund that you mentioned earlier. And there are some instructions on that website for how to do so.
MATT: That was Lydia X. Z. Brown. You can find them on Twitter at @autistichoya. That’s @ “Autistic” and then “Hoya,” H-O-Y-A. You can also find Lydia blogging at AutisticHoya.com.
It’s really important for folks who run distributed teams to remember that employees don’t fall into binaries of “normal” or “abnormal.” We all find ourselves in different spots on different spectrums of ability throughout our careers, and hopefully, with more flexibility around workspaces, work hours, or work styles, we can all feel included and productive no matter what professional setting we’re in.
On the next episode of the Distributed podcast, I’ll be speaking with Clark Valberg, the CEO of InVision, which is a very popular cloud-based design platform that many distributed teams, including Automattic, have adopted. InVision started out as an agency, but after they built this internal tool for their designers, they realized that it was big enough to be a flagship product. InVision is similar in size to Automattic, so I’m interested to hear about Clark’s distributed journey.
Thanks for joining, and see you next time.