Diagnosed with Multiple Sclerosis (MS) in 2006, I became a woman with disabilities and eventually a power chair user. At the time, I was working for the Center for Earth and Planetary Studies (CEPS) at the Smithsonian Institution’s National Air and Space Museum (NASM) in D.C. When I was first hired in 1998, I was 23 yrs old. I had a degree in Geology, lots of prior museum experience, and a can-do attitude. Working at a Smithsonian museum was a dream come true for me. But working on the National Mall in D.C., surrounded by National Monuments and other Smithsonian museums, was the cherry on top.
Research at CEPS focused mainly on planetary science, with most of the department’s researchers participating on NASA planetary mission teams. My duties involved assisting with CEPS research, exhibits, and public programs. I performed a variety of tasks from maintaining databases of scholarly material to designing graphics and print material, helping maintain and update current exhibits, as well as planning and executing special events. Over time, I put together a rather nice work portfolio. My personal point of pride were the exhibit displays I created to report the latest Earth and planetary news.
When I began working with disabilities, it wasn’t a big adjustment. I had a desk job that didn’t involve much physical labor and worked in a ADA-compliant building, so I had few obstacles. And when issues did arise, I found solutions. When I lost dexterity in my hands, typing became difficult. To compensate, I learned to hunt-and -peck at speed with a stylus. When my legs started giving me problems, I started using a cane to help me get about. Unfortunately, my MS progressed, causing my legs to weaken. Before long, I needed the support of a rollator, and then a scooter, before finally getting a power chair.
In the mornings, before the museum opened, I’d perform a roll (originally a walk) through of the CEPS galleries to check for any problems. I had remote access to the galleries’ exhibit displays from my computer in my third floor office. And if there was a problem with the displays, I had to go up to my office to fix it. When my office computer was upgraded to a Microsoft surface, I decided to mount the tablet-sized computer to my power chair. This way I could fix display issues while in the galleries. I also got myself a kneeboard to use as a mouse pad and a wired mouse which could be retrieved if dropped.
Now, the most problematic part of working with disabilities were the long hours I spent sitting in my power chair, especially since my bus commute was an hour and a half one way. On an average day, I would spend over 17 hours straight in my chair. And let me tell you, it’s extremely taxing on the backside. When I could, I opted for a power chair with a seat that could tilt back. Not only did it help relieve pressure on the backside, it raised the legs as well which helped me with my poor circulation. And when I had sleep deprivation to contend with, the tilt allowed me to nap in my chair over my lunch break.
Thankfully, I was allowed to work at home a couple days a week to give me a break from my commute. Commuting wasn’t easy. Being a passenger with disabilities exposed me to more rude behavior, discrimination, and insane situations than I ever thought possible. Commuting in winter was especially rough, with frigid temperatures, snow, and ice to deal with. I worked from home on both a desktop computer and a laptop. The laptop allowed me to work from bed, if needed. I had remote access to my computer at work and when my exhibit displays came into being, I could access them all from home as well.
I loved my job. I even excelled at it. Every year brought more and more responsibilities and duties and every year I rose to the occasion. Despite my hard work, however, a series of unfortunate events led to the elimination of my position in early 2018. It’s sad. And due to the museum’s Revitalization, the NASM I knew no longer exists. The galleries I worked on for years are long gone. It’s bittersweet, but at least I can watch “Night At The Museum: Battle Of The Smithsonian” and “Wonder Woman 1984” when I want to reminisce.
-Jen, aka. “Power Chair Dorothy”
“Not in Kansas Anymore” (www.notinksanymore.com) is a site/blog authored and managed by Jen, aka. “Power Chair Dorothy” (pwrchrdorothy). This site/blog is intended to provide educational and research information, and to share the author’s journey.
Not in Kansas Anymore 