"You're Not Disabled Enough"
Let's get something straight, "disabled" is NOT a dirty word. Moreover, I don't believe it's a boolean value either. Why does society consider a person's "ability" based on a binary scale when in reality it's a spectrum? I consider myself "situationally-abled", meaning I'm less "abled" when during a flair up of a chronic illness and completely-abled otherwise. One day, you'll see me hiking and being a social butterfly - never knowing the chronic illness underneath. When a flair up strikes, there can be a variety of impacts to my abilities: mental instability, attention span deficit, lack of muscle control, uncontrollable pain, inability to stay awake, inability to walk, brain fog, etc. I don't regularly publicize my worst days, but on those days I'm often bed-bound, writhing in pain, and unable to walk without falling down, eat solid foods, stabilize my mood, stay awake for more than a few hours, control my hands (tremors)… the list goes on. So tell me, dear reader - would you label me as disabled based on my severe days or abled based on the presence of completely-abled days? While social labels rarely bother me, "disabled" isn't just a label, adjective or hollow word. Many acts, laws, and contracts specify benefits by this one word. Some examples of accommodations for the disabled include parking, mobility support (wheelchair), priority seating, insurance coverages, and sometimes more/special work leave than their counterparts. For years I worked as a cryptanalyst at the U.S. Department of Defense. I loved everything about the work I was doing and could see myself doing this for the rest of my life.
Anyone: "what are your career goals?" Me, every time: "I want to be the 80-year-old in the back of the room, still as enthusiastic as a fresh intern, sharing stories of the early days of technology and working until I physically can't anymore".
Companies and recruiters often think "we have to get the best minds in here" or "we need to be more diverse when hiring", yet forget the most important part - RETAINING their loyal employees. Just as every average employee, every day I drove into work, parked in the employee parking lot, walked the mile and a half path into the building, made my way across the building to my office, logged a set amount of hours (clock only starts when I get to my desk), and then the reversed it all to go home. It took me a long time to accept the fact that I'm not your "average", "healthy" employee. On days where my chronic illness would flare up, it would take me 45 minutes to get into the building from the parking lot due to the amount of swelling in my legs, level of fatigue, amount of pain, and falls due to some inability to walk. Inside the office, I often struggled to appear "normal" - drinking 10+ cups of coffee to avoid narcoleptic episodes, scheduling additional time to "travel" to my meetings, rereading documents 6+ times due to my inability to focus, taking pain medication around the clock, etc. It soon became very overwhelming and many times it just made more sense for me to stay home (sick leave) instead of physically pushing my vulnerable (physical, mental, and immune system-wise) self and causing more harm to my body in what seemed like an endless cycle. When I ran out of sick leave, I'd have to use my vacation time for chronic illness flares, regular run-of-the-mill illnesses, medical appointments, and treatments (which I resented but agreed to).
"But Sadie, isn't there an Office of Accommodations or something? Don't we have federal laws to assist employees like you?"
The answer is yes accommodation offices and laws "exist", but many of the benefits only apply if you are medically considered "disabled", and chronic illness does not often fall under that category. The accommodation office employees honestly did the best they could with my case, getting me some time to work from home and suggesting I apply for a medical parking permit. Seems like that should do the trick, right? Unfortunately everything is wrapped up in government red tape as I was only allowed to work from home a few hours a week to do clerical work, would have to get a handicap parking pass from the state (requiring me to convince my doctors to officially label me as "disabled"), apply and reapply every few weeks to fight for a temporary medical parking pass, purchase a wheelchair for personal use, and/or apply for a motor scooter. Additionally, I learned that if I "convinced my doctor's to label me as disabled", I'd have automatic access to all of these things and may even qualify for special leave (so I don't have to use up all my personal leave being chronically ill). The words "I'm not disabled, I'm chronically ill" were spouted from my mouth daily and eventually I found myself wishing I were truly disabled 100% of the time (yikes). After 5 long years, I was forced to make a decision - fight the system to keep my job, work within the system to keep my job (misguide/persuade my doctors to label me "disabled"), or leave my dream job in order to increase my quality of life. Easily the hardest decision of my life as this was all I'd known after graduating university and overlapped with my first real taste of independence. In the end, I chose ME. Now, I work 100% remotely at the SANS institute with a flexible work schedule, empathetic/caring/encouraging team, and many opportunities for continued learning and professional development. SANS truly embraces me - all of me - understanding that this big, beautiful brain of mine also comes with a chronically ill body. Both SANS and myself now work WITH my illnesses, not against them and I've never been happier, healthier, and more productive. SANS is even having their first free, public summit about "Neurodiversity in Cybersecurity" next month - which I will be a part of. I'm proud to share my story and live as though my chronic illnesses are "visible" to all. The moral of this story is - ability is not binary (SO STOP SHOVING THAT DOWN OUR THROATS SOCIETY, THANK YOU). You don't have to be disabled enough, sick enough, healthy enough… YOU ARE ENOUGH and deserve to be in an environment where you'll thrive. Note: I cherish every moment I worked for the DoD and understand it's the entire system that needs to change, all of which will take time. While ultimately not the right environment for me, it was a fun, exciting, and collaborative environment to work and highly recommend working for the DoD (with the caveat that the logistical environment is best for you). I'm grateful for everything I learned during my time there and hope to cross paths in the future.