Managing Silicon Spoons

There are plenty of physical disabilities that are obvious, but there are also hundreds, if not thousands, of invisible or hidden disabilities and conditions —the kind of being-sick where the person can look perfectly healthy and normal, the kind where the only way you could tell is if they told you, or if you witnessed an aspect of their required care. They may not “look sick,” but they could be living with anything from Lupus to Type-1 Diabetes to clinical depression.

They are all serious, sometimes debilitating conditions that cannot be cured, just managed. The best example I’ve seen of describing this kind of day-to-day management is with Spoon Theory. Essentially, healthy people have an unlimited supply of “spoons,” whereas those with chronic conditions only have a limited supply. Every daily activity—we’re talking everything from getting out of bed and taking a shower to commuting to work and attending meetings—costs a spoon, or sometimes multiple spoons, to complete. The privilege of the healthy is that they never have to think about how many spoons a task will take to complete, whereas someone with a chronic condition has to think about it constantly. It becomes a mental analysis of checks and balances.

CC-BY Alan Levine, filtered.

In the United States, thanks to the Americans with Disabilities Act, it is illegal to discriminate against qualified individuals with disabilities in the workplace. However, just as misogynistic practices can be hidden under the veil of “not a culture fit,” so can discriminatory practices against individuals with chronic conditions. I have been let go from two jobs in which the reason given to me was that elusive “not a culture fit.” One of those releases also happened to occur within weeks of talking with the HR department—a department of one person, since it was a small startup—after issues with management based on how often I was working from home. We were in the process of setting up a reasonable accommodation for how often I should work from home before I was let go.

While it is true that you never have to reveal to your employer that you live with a chronic condition and they are not allowed to ask, it’s not always wise to keep that information to yourself. In my case, if I were to have any extreme issue at work and were to become unconscious or unable to care for myself, I would like to have coworkers who are aware of my condition and perhaps even trained in how to respond. Because of this, almost everyone I work with knows I am a type-1 diabetic. I make it obvious, on purpose, because I don’t want any shame or stigma associated with it. I check my blood sugar at my desk or the lunch table and I have given myself insulin shots and boluses on my insulin pump within view of everyone. I’ve answered hundreds of questions from coworkers, and I’ve dealt with several managers and HR representatives across my career.

The following are some ways in which I’ve seen companies and/or management behave in ways that have been discriminatory and sometimes virulent towards people with chronic conditions, and tips for managers on how they can do better.

Reasonable Accommodation & Sick Days

In tech, it’s not uncommon for sick & vacation days to be lumped under one “PTO”, or Paid Time Off, label and limited to something like 10 business days or 2 weeks. It’s just as equally common to find “unlimited” vacation and sick time (which usually means whatever your manager approves). For a healthy person, it’s highly unlikely that you will ever become sick enough to exhaust all your PTO time. For someone with a chronic condition, coming down with something as simple as the common cold or as bad as the flu could mean weeks out of the office. Dealing with being sick from a cold or the flu is hard enough, add on top of that the day-to-day management of a chronic condition, and your PTO time could be exhausted in one go.

But that doesn’t mean that an unlimited policy is any better—in cases where I’ve worked at companies with this policy, I’ve often been accused of “abusing” the policy by taking more sick days than a “normal” person would. (I’ve oftentimes felt that what those policies should really be called is “Unlimited, but only for Healthy People and Only When We Say So.”)

CC-BY Jamie, filtered.

I once even had a CEO forbid me from working from home and was told that I would not be paid unless I was in the office. I was sick with the flu at the time, and my blood sugar was being heavily affected by it which added to my already awful symptoms. I had already been out of the office for several days at that point. Obviously, no one wants to take any hits to their paycheck from being sick, and since I had already exhausted all my PTO days (this was under a 10-days-per-year PTO policy for both vacation & sick days) I was attempting to work from home. I also had a doctor’s note explaining that I should be allowed to do so.

And then came that email. I went into work the next day, fully sick, because I needed my paycheck.

Healthy people have the privilege of only having to worry about rent and basic bills and groceries, whereas I have expensive medical supplies on top of that. There was no way I could afford going any number of days without my salary. My manager ended up sending me home early that day, after I had already accumulated a mountain of tissues on my desk. The fact that I had to come into the office to prove I was sick so that they would let me work from home was especially infuriating.

Tips for Managers:

Under the ADA, a company is required to give what is called “reasonable accommodation” to a disabled employee, which are any modifications or adjustments to a job or work environment that allow the employee to perform essential job functions. For someone living with diabetes, like myself, some common accommodations are modified work schedules or modifications to attendance policies, plus the ability to leave for doctor’s appointments or treatments. The first step is to make sure you are educated about the ADA and informed about reasonable accommodations. There are lots of resources available online.

CC-BY Jill Brown, filtered.

If your employee chooses to reveal to you that they live with a chronic condition or have a disability, the only thing you should ask is what reasonable accommodation they would like to receive to do their job. This will allow them to make suggestions based on their personal experience and requirements, as it can vary between individuals. You are not required to meet their every demand, but to work together with them on a plan that works for both of you. This should, ideally, be done early in the employee’s career at your company and hopefully before any problems can arise. Work with an HR representative if your company has one at your disposal. Keep in mind that while you can request sufficient medical documentation to support the request for reasonable accommodation, you cannot communicate with your employee’s healthcare professional without their permission and you cannot request any additional information besides what is needed for the accommodations.

Harassment

Scenario: Once after an all-hands meeting, a newer coworker noticed I had an insulin pump and proceeded to ask me about it:

Him: “Is that an insulin pump?”

Me: “Yes.”

Him: “So you’re diabetic?”

Me: “Yes.”

Him: “Oh! I have a friend who’s diabetic. She’s tried to kill herself a few times. Did you know the suicide rate for diabetics is much higher than normal people? Are you depressed?”

Me: “No… I’m not.”

Him: “How are you not depressed?”

Me: “…”

At the time I let it slide, but he would later continue to ask me questions about my personal and mental health, typically while we were eating at the lunch table in the office, despite me telling him that the questions were personal and I would not be answering them. He would try to disarm me or invalidate my boundaries with “Oh, come on, I’m just curious!” and when I threatened to tell HR, he laughed. He said “I’m buddies with HR! We go out drinking all the time.”

It’s one thing to be curious about the experience of a coworker, but quite another to harass them about it, especially when they ask you not to. Believe it or not, I’ve even had managers and higher-ups ask me similar personal questions regarding my health. Once a manager asked me if I see or have seen a therapist. This was an incredibly personal and invasive question and is extremely inappropriate to ask in any work environment. I did tell my manager that I was uncomfortable with the questions I was being asked, but it was very awkward. Later on I felt my concern was not heard or understood, as that manager proceeded to ask me questions and offer unsolicited advice, and I had no in-office HR person to talk to about the situation.

Tips for Managers:

It’s not your job to manage or monitor your employee’s health, that is their own personal concern. You should never ask intrusive questions or offer advice, especially since you are not a medical professional and you do not share their personal experience. Let your employee tell you about their condition on their own, only if they want to. Ask them if it’s okay to ask questions, and tell them that if anything you ask makes them feel uncomfortable to let you know and you will stop. And when they ask you to stop, actually stop. This allows you to gain some understanding that will help you guide them in the workplace while still giving courtesy to their right to privacy. Again, talk with an HR representative if you can. They can help you determine safe and proper methods for dealing with situations, especially if an employee comes to you after feeling harassed or made uncomfortable in the workplace.

Lack of HR

Startups are notorious for beginning in people’s kitchens and growing, sometimes extremely rapidly, into 100+ person corporations. I’ve worked at companies as small as 5 people and as large as 14,000+. It would be no surprise to anyone that smaller, fast-paced startups don’t prioritize hiring Human Resource representatives. I was the 16th employee at one startup and they didn’t hire an HR person until their capacity was bursting at the seams of their 3rd office, despite being under pressure from a few employees to hire one sooner.

Without an HR person, it’s extremely difficult to get momentum behind requests for reasonable accommodation or to report harassment. (This is also a problem for other forms of harassment which we are all familiar with in the tech industry, but I digress.) It also makes it more difficult to document and keep track of everything from insurance to PTO requests. I’ve been in a place where my reasonable accommodation requests were never formally addressed, even if I asked about them.

When I felt uncomfortable being asked personal questions by my manager I had no in-office HR person to talk to about it, and it made the situation difficult to address. I felt singled out because that manager did not ask such questions to my peers. I had no idea who to raise my concerns to, and I was afraid to talk about it to other managers and bring extra attention upon myself.

And, to be honest, even if I had an HR person there is no guarantee that they will have had the experience to deal with sensitive situations such as this. Part of the problem, especially at small startups, is that HR representatives can often be new and inexperienced.

Tips for Managers:

If your company does not have any HR personnel, put pressure on your leadership team to prioritize hiring at least one, but ideally more. They’re an important aspect to keep the work environment safe and professional for all employees and to assist and possibly protect the company when any incidents do occur. The first HR representative should have at least a few years experience, as well, and be able to mentor newer personnel.

Conclusion

In an ideal world managers, higher-ups, and HR representatives would be aware of an employee’s condition and never hold it against them. Employees with conditions are just as capable and talented as anyone else, and we deserve to be treated with empathy and respect.