The Conversation All Employers Should Know How to Lead

By Nora Elena Genster and Claire Odom

As disability inclusion specialists with Understood, we came into 2020 anticipating some major milestones for people with disabilities in the workforce. It’s been 30 years since the passage of the landmark Americans with Disabilities Act (ADA) in 1990. And this October marks the 75th observance of National Disability Employment Awareness Month.

But back in January, needless to say, we weren’t expecting to be sitting here in October looking back on a year that’s completely transformed the world of work. Almost overnight, our workplaces weren’t functional for anyone anymore. Suddenly, accommodations were everywhere — remote work, flexible schedules, masks.

Employers are often wary when they hear the word “accommodations.” They think whatever’s coming next will be expensive and time-consuming, or put them at legal risk. But in point of fact, a strong and accessible accommodations policy anchored in two-way communication is necessary for a workplace to function well.

We recently got together (virtually) to chat about why accommodations are so important for employees and organizations, and how employers can open the conversations that lead to more inclusive workplaces.

Claire: We both have needs for accommodations in the workplace. But at first glance, those needs probably look pretty different. What kinds of things have helped you?

Nora: I use a wheelchair. It’s obvious that I have a disability — I don’t have a choice to disclose that I have a disability. However, historically, I’ve kept my diagnosis private. That means that my coworkers and employers might not always understand the other, less visible or obvious ways my disability affects me in my day-to-day.

For example, sometimes my muscles “quit,” and on those days I simply cannot move as fast as I might otherwise. Sometimes I can barely get out of bed, I’m so exhausted when the day starts. When that happens, the flexibility to work from home, or even from bed, has been huge. For a while, I felt guilty or ashamed to ask to work from home. But then I started to think in terms of return on investment. The amount of energy and resultant exhaustion I was putting into getting dressed, getting to work, and being in the office was directly, negatively, related to my ability to do my best work at work.

Now, because of the pandemic, my work is all on Zoom. So if I’m meeting new people, I have to ping that I use a wheelchair if it’s relevant to the conversation. So in fact, right now I sort of have an invisible disability as it relates to the workplace viewed through Zoom. Nevertheless, I still need to disclose those truly invisible aspects of my disability. So now I need to “double disclose” in a way I haven’t had to before.

Disability is an inextricable part of life that should be, perhaps, the most important variable in the work-life balance equation. At the very least, it deserves as much attention as everything else.

Claire: I’ve been surprised to see what a powerful accommodation working from home has been for my ADHD and anxiety. I can function just fine in an office environment, but wow has my productivity improved since world events have trapped me in my home with minimal distractions.

My main accommodation is the need for noise-canceling headphones in an open office setting. I feel silly even calling such a thing an accommodation, but I’m completely unable to focus on reading or writing if anyone is talking anywhere near me. I used to think this was something I could overcome with willpower, but after 30-something years of trying and failing, it’s clear that this is the way I am.

I also benefit from extra processing time — something that a remote work setting tends to create naturally. I need to sit with new information and assess my response and understanding before acting. I’m also better able to capture what I need to say and what I truly mean in writing whereas in real-time speech, I can get bogged down in details or can lose my train of thought and end up dropping my main point.

But most of what I need is free and available without going through a formal accommodations process, so it’s pretty easy for me to get my workplace needs met. Have you met any barriers in getting the accommodations you need?

Nora: Antagonism.

The ADA was written 30 years ago. The way we work has changed significantly. The way we treat our employees has changed. The trust we extend to employees has deepened. We’re trying harder to build a good work-life balance. Employees with disabilities deserve to get the benefits of that, without undue burden.

To make that happen, every workplace needs an accommodations policy, and it can’t be too complicated or antagonistic. Accommodations should be as normal as all the other parts of work-life balance. A workplace is not inclusive if the accommodations process is exclusive.

Claire: Agreed. Flexibility and work-life balance perks are on the rise in certain sectors of the economy, especially with the pandemic — things like work from home and flextime, which is great! But it’s important to maintain and consider accommodations as well. They’re not replaced by perks, and these perks shouldn’t obscure the role of disability in our everyday lives. We don’t want to ignore disability just because our policies are flexible.

For example, the assumption often seems to be that if you’re in your home, you don’t need any adjustments in order to work. But that’s not necessarily true, especially when it comes to the mountains of technology we all rely on to work from home.

Another thing I notice everywhere, and think about a lot, is accommodation fatigue. Accommodations aren’t usually temporary. If you need something in order to be productive, it’s likely that you’ll need that thing for the long haul. But nonetheless it’s common for our coworkers and supervisors to get a little tired of being flexible or providing exceptions to the status quo. There may even be a sense that the accommodations user is getting away with something.

In terms of my own accommodations struggle, the biggest barrier so far has been me. Until very recently, I didn’t feel like my diagnoses were disabilities, and I didn’t want to be a bother to my employer or my team. I didn’t feel comfortable asking for anything that felt like special treatment. After working with Understood for a few years and getting an ADHD diagnosis in my 30s, I now understand that the way my brain works requires me to adjust my environment a bit — even when working from home. I feel empowered to identify and ask for what I need, and I’m glad to work in a place where that’s encouraged.

So what has worked well for you? What’s the ideal setup?

Nora: Trust. Faith that I’m an expert in my own needs. While I understand it can be necessary, maybe out of an abundance of legal caution, to have to disclose my diagnosis, the process of asking for an accommodation feels much less antagonistic when I’m not asked to “prove” myself. When I don’t feel like I’m “guilty until proven innocent.” I’m happy to discuss it, I just don’t want to feel like I’m on trial. I’m of the opinion that accommodations require special attention, not special scrutiny.

To that end, I think it’s hugely important for employers to look at the language of their accommodations policies and forms, and to think critically about their process as it exists. Is it a discussion or an “interrogation”? Are disabled employees part of that discussion throughout the process? Were they at the table when the process was created in the first place?

Too often, disabled people are excluded from conversations that are critical to their own well-being. Hence the phrase “nothing about us without us!” Several times in a previous job, I learned after the fact that my boss and a number of people I didn’t know were meeting without me to discuss my medical records and what they perceived my needs to be. That’s a horrible feeling.

Claire: I absolutely agree and would add something that seems so simple, but is so rare: seeing people use accommodations and feeling encouragement from HR and management to seek, use, and continue using accommodations.

To go back to your earlier point, trust is so important, and can be so hard to suss out. I have an episodic and invisible disability that doesn’t really affect my day-to-day until it really affects my day-to-day. Knowing that I can safely disclose, and that I can trust my boss and my workplace enough to admit my “frailties,” is hugely important to me now. I’ve been lucky to work in places that recognize my humanity.

Nora: Exactly. That question of humanity is so important.

I’ve previously said that disability inclusion, and by extension reasonable accommodations, is a recognition of our variable and shared human fragility. It’s such a breath of fresh air to have an employer that trusts me to be well-versed in my fragility — and my strengths! I know what I need to do my best work. The employer should make the process of asking for it accessible and interactive.

Claire: Yes. The number one thing employers should be doing right now is communicating. “How are you doing? What do you need that you don’t have? How can you best work right now and how can we support the right setup?” You have to make time for these conversations.

Nora Elena Genster is a program manager with Understood and previously worked at the Department of the Navy assessing barriers to equal economic opportunity. She graduated from Georgetown University, where she studied the intersection of disability, gender, and citizenship.

Claire Odom is a senior program manager with Understood. She holds a BA from Grinnell College and an MSW from Columbia University. She has spent over a decade working alongside people with disabilities, including with Project SEARCH, the Marbridge Foundation, Job Path NYC, and the NYC Department of Health and Mental Hygiene.