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Managing Disabled Reports: A Q&A

Learn to think about disability as a manager.

This essay began its life as an internal conversation at work and turned into a valuable resource that I asked for permission to publish here. Know that other versions of this document are floating around, and that we’ll likely publish a variation on this piece in a few other places.

The Basics

Who is Answering These Questions?

Hi, I’m Myk Bilokonsky (sounds like Mick Bill O’Konsky) and I run

skewnorth.com⁠

. I am Autistic and ADHD with a side helping of Complex Trauma (CPTSD), which means that I deal with invisible disability on a daily basis. When I’m not at work I spend a lot of time on twitter as

@mykola⁠

where I do a lot of advocacy around neurodiversity, with an emphasis on autism.

I also maintain the Public Neurodiversity Support Center, where you’re likely reading this essay.

My qualifications to speak about disability are that (1) I’m disabled, (2) I’m told I’m good at articulating these things in a way that abled people can relate to, and (3) a lot of disabled people have agreed with a lot of what I’ve written. I cannot — and nobody can!! — claim to speak for the entire disabled community. What I can do is offer a few lenses for thinking about disability and disabled people in a more helpful and informed way.

Finally: this is a fast off-the-cuff response to a lot of complex questions. I haven’t provided almost any links to back up any of what I’m saying — but the research is there on anything I claim, unless I’m misinformed about something. So often what we need more than links to research articles are coherent narratives that tie this stuff together in a relatable way — though the links help. I plan to either add links or pay someone to go through and do so at a later date.

What is disability?

What does it mean to be disabled (not the legal definition — what does it actually mean)?

This is a fantastic first question, thank you! The answer is a bit complex, because different people model it differently. The fundamental divide is between something called the medical model (”disability is when you have an impairment that keeps you from fully participating in society”, roughly) and something called the social model (”disability exists in the relation between an individual’s needs and what their society provides, and so what counts as a disability is largely a function of whose needs are seen as valid.”)

I’m generally a proponent of the social model. People who are near-sighted are not generally considered disabled — why? Because it’s trivial for society to accommodate their need.

The medical model is not entirely without merit, and different disabled people will feel very strongly about this.

⁠

How to Talk About Disability

Initiating Dialog

How does a manager start a conversation with a report around how to best support them? I’m pretty sure it’s illegal to ask if someone is disabled, and I’m worried that just asking “how can I best support you” will be a loaded question with the report having tons of bad experiences.

Again, excellent question. The real issue here is trust — in order to support your disabled employees they need to understand that you are not only their manager, but their advocate, and that you will position yourself between them and the company on their behalf if they trust you with their vulnerability.

Not every manager IS an advocate — many managers see their job as the extraction of value from their reports, rather than supporting their reports as they generate value. A manager who doesn’t fundamentally care about their reports shouldn’t be offering this kind of support, because it would be a hollow offer that leads to the kind of workplace trauma so many disabled people have.

The best way to do this that I’ve found is to make it known that you are open to conversations about support needs from your reports. This can be a blanket statement to your team which is then reinforced one-on-one. But make it known that you will allow them to drive the conversation, and you won’t disclose anything to anyone that they haven’t explicitly allowed you to disclose. Make sure they understand that YOU understand that they are trusting you with this on a personal level.

Appropriate Phrasing

I’m often not sure what the appropriate phrasing and what is okay to ask about. Is it a disabled person or person with disabilities? Is it okay to ask what the person needs? Is it okay to ask how they work best?

When speaking to a report with a disability, I recommend speaking fearlessly, without pity, and with the humility necessary to understand that it’s easy to get stuff wrong.

There’s a narrative of, “oh you have to be politically correct and if you set one foot wrong you’re canceled omg,” and in my experience that’s simply not the case. It’s such a novel and uncommon experience for someone to say something wrong, listen to feedback, and then apologize and correct, that doing so is a faster route to building trust and acceptance than never getting anything wrong.

Mostly what happens is people say something one way, someone with a disability takes a risk and says, “Thank you so much for caring, we know you’re trying, we appreciate you, when you use that word it’s a big trigger for a lot of us BUT I KNOW YOU DON’T KNOW THAT AND IT’S NOT YOUR INTENTION but I just wanted to let you know in case you didn’t anyway thank you.” But it’s met with a defensive tirade from the original speaker. This reaction is a problem on several fronts.

As a manager, it’s probably not okay to ask anyone directly about their disability until and unless they open up to you about it first; then you can ask for permission to ask about it and learn their personal boundaries around it.

“Disabled Person” versus “Person with Disabilities” is one of those points of contention where not everyone agrees. Honestly it comes down to the nature of the disability and individual preference. People with diabetes Have Diabetes, whereas Deaf and Autistic people Are Deaf or Are Autistic, they don’t Have Deafness or Have Autism.

This is a huge issue in the Autistic community and one way to rapidly tell if someone listens to actually Autistic people: if they say “my son has autism” it means that they have internalized an older but common narrative where their son is a “normal” person with “autism added” that leads to what you see. But if they say “My son is autistic,” then they recognize that autism is a part of their son’s makeup and identity, unable to be separated. It’s a small but important semantic point, so thanks for asking!

Personal preference of the disabled person always comes first, before any rules or assumptions. It’s okay to ask how people want to be referred to in this context.

Taboo Topics

Are there any taboo topics? For example, there are many topics that require trigger warnings to ensure safety for everyone. Are there similar topics for disabilities?

Don’t push anyone to share more than they’re comfortable with about their own personal experiences. But also understand that this doesn’t mean that they aren’t literally experts in the general experience of being disabled, and many times are more than willing to talk about the details of it in broad terms even if they are reluctant to share personal vulnerabilities.

For many people, becoming disabled is marked by a change in the social dynamics with all of the people in our lives: suddenly entire aspects of our reality make other people feel uncomfortable, and they avoid talking about it or mentioning it. Being open to talking about our disabled experiences is a great way to show that you see us as whole people not defined by our disabilities but unambiguously informed by them.

Learn to take ableism out of your language. This is like learning to remove sexism or racism but way harder because ableism is in some ways much more pervasive. Some tips on removing ableist speech:

Don’t assume “anyone can do it”, ever, about anything. The variation in human capability is truly astonishing once you learn to see it, and it’s just not the case that very many things fully generalize at all. Capability is one of those things.

Manifestations: “This tool is easy to you”, “to do x you just type...”, “all you have to do is...”

Improvements: “This tool was designed to be intuitive for most people, but...”, “to do X you have to type”, “The required steps are:”

Don’t refer to disabled traits as punchlines or negative things. “That’s lame” says (1) that you associate disability with negativity, (2) that anyone who is disabled is similar to whatever you are disparaging, and (3) that you’ve never really thought about this stuff in a serious way.

Manifestations: “she’s crazy”, “that was a crippling blow to the team’s chances”, “get help!”

Improvements: “She’s struggling”, or more often “I am struggling to follow her thinking”; “that was a blow to the team’s chances”; “Can I help you to figure out how to get supported in a way that would make this easier for you?”

Don’t make assumptions about what’s “normal”. Normal is neither attainable nor desirable to most disabled people, and is in fact often weaponized against us.

Manifestations: “That outfit is weird”, “what a strange question”, “it’s not normal to work four ten-hour shifts”

Improvements: “What a creative look!” or just silence; “Thank you for asking and for framing it that way, I hadn’t considered that!”; “Most people like five eights, but we can figure out a way to make four tens work for you if you need it!”

⁠

On Performance

Disability and Performance

Should disabled people be held to lower performance standards?

Speaking generally, no. Speaking specifically, maybe, sometimes, under some circumstances.

Learning that someone is disabled doesn’t change who that person is, it just informs our understanding of what it takes for them to deliver what we’re asking them to deliver.

Many disabled people have figured out ways of working that allow them to produce output that’s at least on par with their peers’ output. This is a compensatory mechanism for the fact that their output can be really uneven, especially in times where their supports have eroded for whatever reason.

What I have found on my team is that most of my reports are people with a history of burning out because they over perform out of a sense of shame for the ways that they underperform. I see a part of my job as a supportive manager as proactively identifying times when this is happening and letting them know that they don’t have to feel that way on my team.

Something that more people should talk about is that knowledge workers in general

are productive for about 3 hours out of every 8 hour work day⁠

. Many neurodivergent (and especially autistic) people don’t know this, don’t understand the unspoken rules around it, and do their best to fill a full 8 hours every day with productive effort. This means that often a large subset of your disabled population is actually putting in more work than their colleagues.

Sometimes, circumstances change and someone’s ability to do their job degrades. There are three primary reasons this can happen:

Something in their life changed recently and either a new support need emerged or a previously supported need is now unsupported. In this case, they’re going to need time and perhaps guidance in identifying what changed and how to adapt to the new circumstances. This is ideally work that they’re doing in therapy, and not something a manager should be responsible for — but if the change happened at work, then it’s possible that accommodations can be made to replace the missing support.

They have been living their whole life in an unsustainable way in order to deliver outsized impact and value professionally, and at some point (often in their mid 30s) they experience Autistic burnout or something similar. It impacts their ability to function in the world because they have effectively been burning all of their energy reserves by running in overdrive to compensate for disability while hiding their challenges. This is not a sustainable way to work or live, and eventually the bill comes due. If and when this happens, the best thing a manager can do is remind them that short term disability leave is available and that they have been paying into it, and help them navigate a way to get time away from work that they can use to seek professional help in order to restructure their lives. This demographic, if unsupported, eventually becomes the third group...

Sometimes people become disabled in mid-life, and lose the ability to do the things they used to do. It’s easy to think “oh that must be really hard” and feel sorry for them, but the real challenge is learning to see that (1) they are likely going to have a serious identity crisis as they learn to divest their sense of self worth from their ability to be productive, (2) they are going to need a ton of support both personally and professionally, (3) what you can provide as a manager is limited, but you can shield them from compounding pressure on their new impairments by reassuring them that work can afford for them to be less productive for a while as they figure out new ways to show up.

It takes time, but ultimately the thing to understand (for both you and for them) is that disability is not a bad word or a burden. It just means that certain things are inaccessible to them without support, and that that lack of support is not their fault or responsibility.

Performance Exceptions

Under what circumstances should exceptions be made in terms of performance expectations?

Generally speaking standard performance metrics can and should apply, with the following caveats:

See above re: expected output and the circumstances under which degraded output may become an issue.

Performance metrics should focus on output more than process. Many disabled people simply work differently — cannot put in the same amount of hours, cannot handle as many concurrent projects without getting overwhelmed, etc — and a big stressor in many of their lives is hiding the fact that they’re struggling with these things. If they’re assured that the only thing that matters is their output, and that they’ll be supported in whatever means they require to achieve it, then that’s a huge source of stress and anxiety removed.

“Are you saying that disabled people shouldn’t have to work 40 hours?”

I’m saying that many of us can’t, and that unless someone is fixated on tracking hours worked, nobody else would ever be the wiser. It shouldn’t be anyone else’s business if someone needs to take a nap in the afternoon to get through the evening’s work, as long as they show up for meetings and ship their deliverables etc. It’s no different from other employees taking coffee breaks or social media breaks — it’s a part of what gets some people through the day.

If we are simply unable to be productive for some percentage of the time we’re at work that means we necessarily learn to be more productive in the time we ARE able to be productive. See the stuff above about overcompensation.

Many disabled people show up for a full 40 hours even if it means they have to work well into the evening or night to get it done. Often, it’s simply better to let people work the hours they need to work in order to deliver their output effectively, and only dig into actual time worked (in a safe, supportive way) if there’s an issue to be addressed.

What If They Can’t Do Their Job?

If an employee is unable to perform at the specified level due to disability, then one of two things needs to happen:

The supports the employee needs in order to perform at this level must be identified and provided.

The employee should be informed that they are currently unable to be supported in a way that would allow them to perform their job, but that other internal options are available. If someone has recently become severely impaired, then maybe moving to a lower-pressure internal role would be preferable to them than being put on a PIP and eventually terminated.

Disability is often highly variable. As noted elsewhere, it’s often largely about having needs supported, and that means you’re often building a house on a dynamic foundation. If someone enters a period of crisis where they’re not able to perform, then you should consider what changed in their needs, and whether the change is temporary or permanent. If temporary, well, sometimes we need to be patient with peoples’ challenges. If permanent, then the company can’t pretend this person is a good fit when they’re not. But as a manager, I would still be advocating for them all the way to the pink slip, making sure that we’ve exhausted all options at supporting them and given them all the time we can reasonably give them, including short- and long-term disability leave.

Underperforming employees are oftentimes disabled without realizing it. Very few people get up and think “How can I cheat my employer out of time today?” It’s more often a case of “Oh my god, how can I handle all of the pressure today?”

⁠

Supporting Disabled Reports

Safe Team Culture

How can I make my team safe for disabled people? For example, I often talk about my own mental illness to create a space for my team to feel comfortable with theirs. I am not disabled, so I am not sure how to go about this.

First I’d ask you to consider: are you sure you’re not disabled? Mental Illness and stuff like ADHD is actually disabling according to the social model, and it’s okay to own that label it doesn’t take anything from other disabled people when those of us with invisible disabilities claim it too. Happy to talk about this more personally if you’d like! :)

Second, understand that you can’t create a safe team culture if you don’t have a set of trusted one-on-one relationships first. Many disabled folks are very used to a company or team saying one thing and doing another, and approach team culture stuff with trepidation at best. It’s often a game of, “Is this ostensibly inclusive thing going to exclude me in ways that I’m now going to have to take a risk and educate people about?”

Third, once you have established a degree of trust with your reports, you can let them know on a one-on-one basis that you’d like to be more open about disability within the team. You can ask if they’re comfortable with a general disclosure along the lines of, “One of the folks on this team was talking to me about their challenges with...” and then letting the rest of the team see that you’re not going to tell them one thing in private and another in public.

Fourth: integrate mental/emotional health into your team standups. Because my reports trust me, they trust that they can be honest about their current mental state on a scale of 1-5 every day in a Slack standup I set up. If anyone ever says they’re at a 1, I’m in their DM’s asking how I can support them, how the company can support them, and reminding them that they can take time off at any time for any reason if it would help.

“Take the morning off and check in with me this afternoon” is a great thing to say to someone who is struggling, and it doesn’t require them to log formal time off. It’s just a way to give them flexibility that day if they choose to accept it.

Hiring Disabled People

Are there specific job boards, groups, etc that we should be focusing our attention on?

The key thing is trust. It’s not enough to say, “We are disability-friendly.” You have to put your money where your mouth is, and have good answers to hard questions.

The best way to recruit disabled folks is to make sure the disabled folks that already work for you are seen, heard and fully accommodated. Then ask them about their communities and networks. A company telling me that they accommodate disability is one thing. A friend telling me, “At my new job they not only have unlimited time off but you can explicitly use it to work partial days whenever you need to!” is another.

Making Things Accessible

I have never thought about having live transcription during meetings, and having trainings be available in written and video form. Are there any other things like this that we can make more accessible?

Everything that’s available in meetings should be available in writing outside of meetings.

Recordings of meetings are okay, but they’re a waste of everyone’s time when they could often be replaced with quality meeting notes that focused on the details that were relevant.

Little things help a ton with executive function stuff.

If you’re referencing a document, provide a direct, clear link to that document so that “figure out what document someone is talking about” doesn’t become a step in the process.

If you’re talking about an issue, link to the issue or at least refer to it by issue ID.

Be as specific as possible with acceptance criteria for any assigned task. Everyone will ideally sign off on a checklist of requirements that then gets turned into a set of issues. When a new requirement emerges it’s added to the checklist and the set of issues.

Leave as little to ambiguity as possible. A lot of us spend our whole lives wondering what’s being left unsaid, or what was really meant, or which of the 200 details we just received were the important ones. Compliment sandwiches confused my autistic butt for a really long time, because people would come up to me and say something nice for no reason, then ask for something (oh that’s why they were nice) and then say something nice at the end. To me this always felt crass and manipulative, like transparently so, but I guess it’s normal in neurotypical culture.

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Additional Resources

Resources to Learn More

A lot of resources exist, but 90% of it was produced by non-disabled people.

This is especially a problem with neurodiversity stuff, where most modern medical practices are premised on fundamental misunderstandings of neurodivergent needs.

When it comes to trainings, just like when it comes to being supportive, the key is to listen to and believe disabled people. Your training organization should be run by disabled people, not abled people exploiting disabled employees for profit. Your training material should be produced by actually disabled people.

Training

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