Workplace 4.0: Accommodating the Immunodiverse
Did you know that 133 million working Americans have a silent second job? These people are never sure when they’ll be called in for their second shift. They don’t know how long the shift will be or when they’ll be able to rest. Sometimes they get called in during the middle of the work day. Sometimes the shift lasts an hour, sometimes several months. Almost all of these people quietly, they quietly plug away at these jobs whenever they have a free moment. Most of their co-workers and managers will never know they hold down another job.
This is the life of the working immunodiverse. Immunodiverse people are those who have atypically functioning body systems. They manage invisible, chronic illnesses, such as Multiple Sclerosis or Crohn’s Disease. They represent almost 10 percent of the workers in the United States, and yet, they are often overlooked for accommodations because they present as well or “able-passing.”
I am one of these immunodiverse people. I manage several complex chronic illnesses, originating from a tick bite that gave me Lyme Disease back in 2003. My illnesses do not disable me completely and I love my job working in public policy as a lawyer. However, like most immunodiverse people, I have “flare cycles” that keep me swiveling between temporary remission and debilitating pain. These cycles are unpredictable, but they can be reduced or managed, with the right support from willing managers.
Receiving accommodations from our employers for our “side jobs” allow us to contribute meaningfully even as we manage complex medical conditions. And we are worth it — not least because we represent the millions of people just like us, who perceive products and services in different ways because of our unique experiences. We have access to an understanding of what life is like for millions of people whose voices aren’t usually represented in the workplace because of ableism.
And, even without considering those advantages, we are very good at the work that we do — and often, determined to it. That’s why companies are starting to wake up to this reality and accommodate immunodiverse employees.
Already, some companies are changing the way they view disability to accommodate this reality. Many companies and states offer short-term disability for incidents such a one-time surgery or recovery from a car accident. Some companies are even doing better with addressing and accommodating those with mental health issues. These changes help people stay active, ensure that employees don’t leave the workplace preemptively, and helps avoid lifelong dependency on disability benefits.
In spite of this progress, we are seeing a large part of the immunodiverse community opt out of formal work due to the difficulty of finding truly supportive employers. Many people move to consulting, taking on projects as their health allows. Some people use their creative side to make art or coach or teach online. Others set up some sort of relatively passive income, like landlordship. In other words, when companies can’t accommodate us, we start our own small businesses.
Of course, some people with chronic illness do have to make health management their full-time job, and need to be compensated for it. And others cannot leave their jobs because of poor healthcare options. Others of us are eager to use our healthy days to contribute to the world around us through work at a company.
And some of us want to do that work as members of teams, and enjoy the kind of work that requires sustained, long-term advocacy & expertise. I’d rather work in an office with a robust team and daily collaboration. All it takes is finding a company that’s as willing to work with me as I am to work with them.
Which companies are doing this well?
Unlike many disabilities, there’s no standard package of accommodations for the immunodiverse that could be legally mandated. We have different needs at different times. What we need most is a shift in how our employers view us. Instead of a binary between “sick” and “well,” we need to be seen on the spectrum that represents our lives, and we need our accommodations to be as agile as our illness.
Below, I’m going to detail some excellent examples of companies in the United States who have approached next wave disability accommodations with ingenuity and enthusiasm, to good results.
GitLab is a tech company that helps software engineers write code in groups. I love them because they are super transparent with their diversity practices and values, call in specific disabilities that are normally discriminated against, and call out the need for “culture add” not “culture fit.”
GitLab keeps their employee handbook public, so anyone who is interested in working for the company doesn’t need to ask about things like transgender medical services or parental leave, but can see their policies ahead of time. It also explicitly calls-in folks who are neurodivergent, describing them as a competitive advantage to the company. They say:
“Neurodiversity is a type of diversity that includes Autism, ADHD, and other styles of neurodivergent functioning. While they often bring unique skills and abilities, which can be harnessed for competitive advantage, neurodivergent individuals are often discriminated against, and sometimes have trouble making it through traditional hiring processes. These individuals should be able to contribute as GitLabbers. The handbook, values, strategy, and interviewing process should never discriminate against the neurodivergent.” [links in the original.]
GitLab has joined the ranks of tech companies that look for “culture add” rather than a “culture fit.” They explicitly say they don’t want a candidate because “we’d like to have a drink with them” — but rather they want “cultural diversity instead of cultural conformity.” This is important for many minority groups, but also those with disabilities.
Clever is an education technology company that helps connect students in classrooms with their education technology applications. Clever is great because they have a very accommodating food policy. While working at Clever, I was following the Auto-Immune Paleo protocol, a very restrictive style of eating that cuts out all inflammatory foods.
Together, Clever and I set up an account with a food delivery service where I could custom order lunch that met my very strict diet requirements using the daily allotted money that they spent per employee on food (minus delivery fees, they picked those up as a part of the accommodation). Every three months, HR checked in with me — was I able to eat some of the snacks provided? Was I getting enough variety with my lunches? Did I still need the accommodation? Did I feel “othered” while eating my special meal? Was there anyway to make it easier? I owe much of this to an incredibly empathetic woman named Ashley. (Thanks, Ash!) I talk more about this accommodation during a speech at the TechInclusion Conference, which you can watch here.
Mighty Well is making having a medical condition fashionable for the 133 million Americans who live with a chronic condition by applying sportswear fabric technology to the medical industry and building a digital community of Friends in the Fight. The founder and CEO, Emily Levy, is an immunodiverse woman who manages chronic, late-stage Lyme Disease. Over half her staff also manage a chronic condition(s).
As a part of the company culture, everyone on staff is able to take as much time as they need during a flare, procedure, or treatment. Emily says, “If someone needs time off, we don’t ask questions. We would rather the employee be in a good place to produce good work than turn something in that isn’t their best work.”
In many offices, this is the opposite — it’s considered taboo or invasive to speak about medical conditions. But because Emily is open about her health battles, she has created a culture where employees talk about their health and are “out” about their medical challenges. Creating the expectations that these conditions will be accommodated is paramount to ensuring the employee feels comfortable asking for what they need.
These are just a few examples of companies who are working on the next generation of disability accommodations. If you have other examples or ideas, let me know in the comments and I’ll put them together in my next piece. The more examples we see, the more vision we’ll have on how to create a more inclusive and accessible future for the immunodiverse.
Our illnesses still aren’t well-understood. We don’t have cures because we don’t have a perfect understanding of these diseases. Because we don’t have a perfect understanding of these diseases, we can’t offer a perfect set of accommodations.
But I can offer a policy that is one-size-fits-all. Recognize what we have to offer. Collaborate with us to create the conditions that let us do our best work. Celebrate as we thrive together. It’s a policy that agrees to work with employees no matter what second jobs we have outside of the office.
Read Next: Introducing Immunodiversity.
Liz Travis Allen is a lawyer, public policy strategist, and speaker who applies her unusual combination of experience in service of a more equitable future. She is available to speak at your workplace about diversity and inclusion, invisible disabilities and women’s empowerment. Learn more about her work on her website, on LinkedIn and through the Invisible Stories Project.