Editor’s note: Words are powerful—and it is important to be mindful of the implications of both identity-first and person-first language. This article uses identity-first language, the preference of its author.
How do you talk about disability in the workplace? That’s a big question. Let’s start with a thought exercise. Imagine walking into a meeting and realizing that you can’t recognize anyone there. You scan face after face not knowing if these are the people you came to see or complete strangers.
Your first reaction is confusion as you search for identifying characteristics. It’s no use—all of these people are dressed the same. You have no way of telling them apart from any other group of young-ish professionals. Dread begins to sink in. You have a presentation to make. You need to either discreetly ask if this is the right room or risk giving it to people who may not even know who you are.
This has been a recurring experience of mine, not just throughout my time as a project manager, but in everyday life as well. I have prosopagnosia, AKA face blindness. I can’t hold the memory of a face in my head. This isn’t a vision problem. I can see a face when I’m looking at it, but it’s gone as soon as I look away. As you can imagine, it’s caused me a lot of trouble over the years. All my relatives could tell you a story about me failing to recognize them, or worse, mistaking a complete stranger for them. Face blindness has no treatment and no assistive technology. I’ve had to learn how to manage my own symptoms.
You can learn to recognize someone without any memory of their face. I memorize peoples’ hairstyles, their voices, even their wardrobes. The problem is, those are less permanent than faces, and the second they change their look I’m lost again.
Another problem I have is recognizing people out of context. Just because I recognize someone on campus or at work doesn’t mean I can reliably pick them out at the mall or in a restaurant. I spent my academic career at a series of very small schools to give myself better odds of keeping track of those around me. The classes I took were small, often filled with the same classmates and teachers, and they were all wonderfully supportive. Over time, I became confident enough to ask those awkward questions like ‘is this the right class?’ and ‘are you on my team for the project?’
I will never learn how to recognize faces any more than a blind person will learn how to see. Something in my brain isn’t working properly, and given how little we know about how the human brain actually works, that is unlikely to change.
But you know what can change? The way I and the people around me approach my disability. These days, I have no problem giving presentations and carrying out conversations with people I don’t know. In turn, I ask that my teammates understand why I don’t greet them outside of work and why they need to regularly re-introduce themselves. As long as my team is willing to work with me, I can work wonders, but without the support of those around me I’m in trouble. This is how I experience being disabled.
That’s my story, but there are as many conditions, symptoms, and diagnoses as there are stars in the sky. Every disabled person has their own perspective and their own needs, many of which do not overlap. These contradictory requirements are called Competing Access Needs. The initial impulse may be to ask which of these needs are “real,” but that approach is flawed for one simple reason: they’re all real. Even outside the Disabled community, people need different things out of life to be successful and happy. The difference is just a bit starker for us.
The truth is, you can never be universally inclusive. Every set of rules is going to be exclusive to someone. There’s no magical way to get around that and I’m not here to tell you otherwise. The question you need to be asking is ‘who do we want this space to be inclusive towards?’
The initial impulse may be to ask which of these needs are “real,” but that approach is flawed for one simple reason: Even outside the Disabled community, people need different things out of life to be successful and happy. The difference is just a bit starker for us.
My workplace support toolkit
If we were working on a project together, what could you do to support me? Well, in the current climate, you wouldn’t have to do very much. As long as we’re all working from home in a purely digital environment, I’m doing just fine. I do my best work through emails and messaging, with usernames and contained environments to keep me from getting lost. That said, here are a list of things you could do to support me if we were working together in a physical office:
1. Introduce yourself when you see me. This gives me some context for who you are.
2. Wear a nametag—weird, I know, but it’s incredibly helpful to me.
3. Give me access to a computer or a phone during meetings, seminars, and planning sessions. Why? Because I have several other disabilities completely unrelated to my face blindness which make it painful to handwrite, so that’s how I take my notes.
4. Make sure someone on the team stays with me if we’re entering a crowded area. It’s easy for me to get lost and overwhelmed.
5. Be understanding and willing to learn.
That last one is by far the most important thing anyone could do for me. In fact, it’s the most important thing you could do for any disabled person, in or outside of the workplace.
There are a lot of stereotypes and assumptions about the Disabled community. News stories about how “inspirational” disabled people are for holding down jobs and daring to go out in public are aggravating when you’re the star. It encourages the line of thought that disabled people shouldn’t be able to do these things. That leads to people feeling pressed to cover up their disabilities because ‘I’m not disabled enough’, people who dare to stand up from their wheelchair for a second being harassed in public for “faking,” and, of course, more “inspirational” stories about people who “don’t let disability define them.” Never mind that, for many, disability does define much of our lives.
The Disabled community is more than just sad commercials encouraging you to donate to charity. It’s full of hard-working people with dreams, professional goals, and, well, lives.
We do not need or want pity. What we do need is for you to be straightforward, understanding, and willing to learn. I know this because I’ve worked with these people as their teammates, above them as their project managers, and under them when they serve as PMs. And on top of that, I’m also one of them. I may not be able to tell you exactly what each of your disabled teammates specifically needs from the workplace, but I can definitely tell you how to find out.
Picture a workplace where people feel comfortable sharing their access needs, even if those needs are conflicting. Picture project managers who ask what they can do to support their team rather than jumping to conclusions. Picture a flexible team that’s prepared for schedules to shift on a day-by-day or even hour-by-hour basis.
This is a workplace that would never demand employees disclose information about their disabilities or explain why they need accommodations, tokenize their disabled workers, suggest that diets or yoga might provide a magical cure, or mention the word “inspirational” in the same breath as something that would be normal if an abled person did it—for example, holding down a job.
In this environment, people would always ask if a wheelchair-user needs help before grabbing the handles and accept it if the answer is “no.” The same would go for grabbing the arms or shoulders of someone visually-impaired. People would respect service dogs and not distract them from their jobs. And if a disabled worker noticed a problem, the whole team would be willing to help brainstorm solutions.
The Disabled community is more than just sad commercials encouraging you to donate to charity. It’s full of hard-working people with dreams, professional goals, and, well, lives.
The most important step to building this workplace is not any specific accommodation or piece of etiquette to memorize, but the overall mindset. Treat disabled people like people—people who know what we need to be productive. If you have ideas for how to help us, talk with us, not over us. When we talk to you, listen, and then find ways to act. Don’t try and clear out all the obstacles in our path without consulting us; trust us to tell you what we need help with and what we don’t.
Give us that much respect. That’s the most important thing we’re asking of you.
Advice for supporting Disabled coworkers
1. Ask before you do anything to or for us, especially if we’re in a situation where you have power over us.
Don’t grab a blind person’s arm without asking them if they need a hand. Don’t start pushing a wheelchair without asking the occupant if it’s okay. You may not mean any harm, but that doesn’t make it any less scary to suddenly have our personal space and autonomy invaded.
2. Don’t make a big deal about how “inspiring” or “brave” we are.
Definitely don’t tell us that you wouldn’t be able to do what we’re doing. Especially don’t tell us that you’d rather die than be in our place.
3. When talking to someone visibly disabled with someone assisting them, do not talk over their head.
Reply to whoever is speaking.
4. If a coworker with chronic pain expresses that pain, don’t make a big deal about it unless they are.
The thing about chronic pain is that it never goes away. We just learn to live with it. Sometimes, that means venting or kvetching. We may appreciate a sympathetic ear, but we probably won’t appreciate a gasp of horror.
5. Don’t make assumptions about what people may or may not need.
Do not ask for proof. Do not make people disclose their diagnoses to you. Offer help, but do not force it on someone who hasn’t accepted it.
How we overcome obstacles
It’s difficult to say exactly what kind of things a disabled teammate may need help with. After all, different people face different barriers and need different things to overcome them. If everything goes right, you may not even notice those barriers exist. Here’s an example of that happening to me.
One of the first multimedia projects I led was fortunate enough to have Remy, a gifted composer, on the team. I was introduced to him digitally through our shared network, and he rapidly became a cornerstone of the whole project. He gave me excellent feedback on my writing, added new dimensions to our goals, and reliably produced wonderful tracks to accompany our visuals and storytelling. Several months into our collaboration, he casually revealed that he was visually-impaired—so much so that he’d been using a screen reader to communicate the entire time I’d known him. I hadn’t had a clue.
Learning about Remy’s disability didn’t change anything about his work and we are still collaborating on projects. However, it did prompt me to ask him if there was anything else I could do to make things easier for him. He gave me one minor suggestion—to use an identifying symbol like # to mark new edits on shared docs—and then thanked me for asking, because he didn’t know many people who would’ve asked that question. It was just five minutes of my time, but it told him I was willing to listen, and that meant the world to him.
Shortly after I met Remy, I joined editor s.b. smith in working on Disabled Voices Anthology, a collection art, poetry, and writing created by and aimed at the Disabled community. It was one of the best experiences I’ve had as a writer, but it also taught me a lot about what problems disabled-led projects can run into.
“The project took longer than most anthologies would take because I advocated for extended deadlines and whatnot to accommodate the fact that both myself and the contributors have various disability-related setbacks in our lives that often make strict, rigid deadlines and timelines difficult to follow,” smith said on the subject. She also worried that the importance of planning on “Crip Time”—making plans that allow for scheduling problems caused by health issues—could be difficult for abled people to wrap their heads around. There was a lot of back-and-forth between her and the publishers while everyone tried to get on the same page. In the end, they stuck as close to smith’s flexible schedule as possible, but everyone was feeling a little burnt out.
Disabled Voices Anthology was released by Rebel Mountain Press in 2020 and smith moved on to freelance editing. She plans to focus on that and serving disabled-led projects in the future, though she’s also considered the possibility of doing sensitivity reading.
Sensitivity readers are experts at bringing the disabled experience to life. They can peel back layers of ableist assumptions you may not have even realized were there. If your project is directly aimed at a disabled audience, like hers was, then it’s especially important to keep listening to both sensitivity readers and your disabled teammates all the way through. We’ll keep you informed on politics and important figures within the community and do our best to keep the end result as authentic as possible.
However, smith did have some cautionary advice: “I’ve been trying to critically mull over the benefits and drawbacks to sensitivity reading. I guess what I think is this: a single sensitivity reader can only be so informed.”
What smith means here is that unlike historians or scientists, sensitivity readers can only speak from their own experiences. When you’re dealing with a group as diverse as the Disabled community, it’s impossible to put everyone under a single expert’s umbrella.
smith noted that she wouldn’t have much advice for depicting a wheelchair user, but she would have a lot to say about depicting someone chronically ill. A deaf person might not be able to tell you much about how to respectfully—and accurately—depict a blind person. I could tell you what it’s like to have an invisible disability, but I don’t know what it’s like to be picked out of a crowd. It’s important to keep these limitations in mind when you think about whether to bring in sensitivity readers.
The Disabled community doesn’t have a monopoly on stress and difficulty in the workplace, but we do have a lot of workarounds and potential solutions to share.
Everyone is awesome
Whether you’re a disabled PM or working with one, the main piece of advice that I will offer you is to be upfront as hell. Make sure everyone working with and above you knows what your access needs are. Say no when necessary. Ask for more time. Set boundaries and keep them. Easier said than done, but also much easier than getting halfway through a project and then realizing you can’t meet a deadline or complete a task solo. We all need help sometimes. That’s part of being human.
I’ve always found it easier to ask for a deadline extension than try and push myself beyond my limits. The few times I strayed from this rule, my supervisors noticed immediately. One of them, after listening to me haltingly explain that I’d taken on too many responsibilities and shut down from stress, told me she’d give me the extra days I needed to redo the project.
Of course, not every boss will be so accommodating. That isn’t anyone’s fault, but it is your responsibility to deal with it. “We suggest you be honest and straightforward about your needs from the beginning. If things get hostile well into the project, after you’ve been upfront and the people you’re working with have feigned tolerance, lean into other disabled people for support and get ready to advocate for yourself,” says smith. “Be intentional and hopeful, and also ready for things to not work out.”
That’s good advice. No matter who you are, reach out to your teammates if you have the energy, especially if they’re having a hard time. The Disabled community doesn’t have a monopoly on stress and difficulty in the workplace, but we do have a lot of workarounds and potential solutions to share. Disabled workers often specialize in remote, digital jobs. We’re already experts in time management, setting clear deadlines, and prioritizing important tasks, and we certainly understand how to work from home. smith gave us this example: “when I think about someone working in IT, I think about someone who gets stuck with these unusual problems that are confounding to most people but that they, with a seemingly natural ease, can fix.”
Disabled people tend to be well-equipped to find glitches and kinks in existing systems. After all, we’re the ones who usually get caught in them. Just living gives us a lot of practice with creative problem-solving.
Let’s go back to me for a moment. As a PM and as a teammate, I make a habit of typing up notes at every step of a project, including brainstorming sessions. I started doing this because taking notes by hand hurts, but it’s often the reason my projects start out organized and with clear goals. I’m uniquely suited to making sure everyone can access necessary information and keeping the rest of the team up to date when the goalposts move. That’s pretty awesome.
So, how do you talk about disability in the workplace? With understanding, a willingness to learn, and respect for your teammates’ skills and accomplishments. Different people have their own specialties, but at the core is the same drive to overcome any obstacle. Sometimes that means cutting it off at the pass. Sometimes it means driving around insurmountable hazards. Sometimes it just means knowing what you’re in for and planning accordingly. The Disabled community is already used to solving problems. Give us the chance to tackle yours.
