by robbievance
(…continued)
In the summer of 2002, while I was dealing with the issues involved in getting my Master’s diploma mailed to me, I was also looking for a job. Unlike my previous job searches as a high school kid looking for a way to buy hamburgers and movie tickets, this time I was packing two college degrees earned with pretty decent GPAs. I thought there would be tons of employers out there looking for a guy with my pedigree.
As it turned out, I was trying to enter the workforce at the worst time in several decades, and I couldn’t apply for jobs that might have a lot of travel or even light physical requirements because of my disability.
After a couple months back in my old bedroom at mom and dad’s, I’d watched all the TV and played all the video games I could stand. Thankfully, one of my friends from my graduate program let me know about a temporary job that he was leaving to take a permanent position at the state mental hospital. After calling the person in charge of filling the position, I went in for an interview and was hired immediately after I told them I had a truck and could drive myself to work.
The next year of my work life was spent in a cramped, windowless office in a building where we had 3 actual fires complete with smoke, sirens, and firetrucks. My 2nd-floor office and my inability to descend stairs made for a few terrifying and quite painful experiences of being carried down the stairs by members of the Jackson Fire Department. When I wasn’t evacuating the building to avoid burning to death, I did research on job titles and salaries of public employees in Mississippi and surrounding states while I also searched for a permanent position elsewhere.
Then, in August of 2003, my Sunday School teacher told his neighbor, who happened to be the Secretary of State, about me, and that led to a job interview for an entry-level position in the Secretary of State’s Election Division. I remember going to the interview held in the 1st-floor conference room with the HR director and one of the Elections directors. Even though it was just an entry level job, it would get my foot in the door, and there couldn’t be another place to work that would be more interesting to me nor more relevant to my field of study in college. I was interviewing for my dream job.
A week or so after the interview, I got a call from the HR director that I’d interviewed with, and she told me that they thought I was overqualified for the position. My heart immediately sank like a stone, but only for a second. She continued by saying that they were very impressed with my interview and had another position in mind for me. The Federal government, in the wake of the absolute fustercluck associated with hanging chads in the 2000 presidential election in Florida, passed the Help America Vote Act which added a truckload of new regulations on the states’ election functions in exchange for providing funds for updating voting systems. One of these regulations involved surveying polling places to ensure ADA guidelines were being followed, and they thought that since I was disabled, I’d be the perfect person for that task. However, on my first day at my new job, my spunky new boss pulled me aside and asked if I was dead set on doing that because she had something else in mind for me. I was down for whatever they wanted and agreed to research residual votes instead.
It was my time at the Secretary of State’s office that saw my mobility wither away to a point where many of my basic physical abilities were stolen from me. My legs became so unsteady, that walking without a wall or some other object to steady myself with was likely to end with me tripping on the carpet. My back muscles had also weakened to the point that if I leaned over, I couldn’t straighten my torso without help. I was basically in danger of falling anytime I wasn’t seated or leaning against something. These new physical limitations, compounded with the ones I showed up with on day 1, caused me to avoid as many potentially difficult and/ or embarrassing situations as I could by staying in my office as much as I possibly could.
That wasn’t only how I dealt with my physical struggles at work, though. I dealt with my whole life that way. After work, I went home, got in my recliner, and stayed there until I went to bed. I never went out to eat other than going through a drive-through window at a fast-food joint and stopped going to church too. The only friends I would go see were those whose house was familiar to me and was also easily accessible. If there was a gathering where there were to be lots of people I didn’t know, I would offer up some lame excuse to avoid the embarrassment of letting strangers see my awkward movements. My disability was rendering me agoraphobic.
Then, in July of 2007, at a visit to the MDA clinic, my doctor recommended that I get fitted for a scooter or wheelchair for when I was ready to use one. So, I looked through the brochures and websites that the physical therapist showed me before finding a model that didn’t look so much like something that belonged in a nursing home. Then, about 5 months later, I got a phone call wanting to know when my new chair could be delivered.
A few days after I got the call, a guy from the medical supplier brought the chair to my house and adjusted it to fit me. I absolutely hated it. It was awkward and placed a blinding spotlight on my inabilities. There was a long period of time between the day I received the chair and when I used it outside my house. It stayed parked in my front guest bedroom for months. Every time I went past the door, I avoided looking at it because of what it meant to me. It symbolized the end of my independence and my transformation into an invalid, dependent on someone else for every aspect of my existence.
Then, in the spring of 2008, I’d received a promotion at work that required me to organize and attend meetings of the State Board of Election Commissioners at the Governor’s office which was on the other side of the Capital from my office. The distance was too far to walk and too close to drive, so I decided to get Dad to pick up my chair and me from my house on the morning of the meeting and deliver both of us to my office. It was the first time anybody at work knew I had a wheelchair and the first time I’d taken the chair anywhere.
As I wheeled around my office and to the meeting that morning, all of a sudden the ease of mobility that the dreaded contraption afforded me almost instantly melted all of the dread and insecurity I had associated with being seen in the chair in public. I remember being excited to get to go to a restaurant down the street that I’d only experienced by take out up to that point. Meetings that once gave me heartburn because of the physical struggle involved with getting up from my seat and the embarrassment of having to do it in front of other people were now no big deal, and I even looked forward to most of them. The chair that I dreaded for so long turned out to be a harbinger of freedom. The possibilities for my future that had seemed so limited, all of a sudden were seemingly boundless.
I spent almost 8 years at the Secretary of State’s office working with lots of great people, with a few not so great people, and under two different administrations, one Republican and one Democrat. My career steadily advanced there, including almost every position that didn’t require a Juris Doctorate, but when I left in June of 2011 as a Director of Elections, politics had finally crushed my spirit, and I left completely politically jaded. Some election days, it’s still hard for me to even muster the energy to vote. The institution of democracy that inspired me as a young man chewed me up and spit me out.
Since I left that job dealing with elections, I’ve moved on to another job that I enjoy, surrounded by great people, with less stress, and a more accessible environment as well. I’m now zipping around in my third chair and have almost no anxiety about my disability anymore. One day it hit me that most people are so self-involved that they don’t pay much attention to anything other than themselves or what’s going on immediately in front of their faces.
If someone looks at me a little longer than usual, it’s no big deal. They’re usually just curious. Most folks I run across are very nice, and the only complaint I sometimes have is that some people tend to be unintentionally condescending. They assume that since I can’t stand up, I’m deaf or stupid. I can’t tell you how many times people lean over to get level with my face and talk very slowly and loudly when they first meet me. I want to then lean in close to their face and reply to them in the same slow loud voice. But, that’s not the way to make friends and influence people, so I just nod and think, “Bless his or her little heart.”
This post is the last of the series that I’ve tried to use to hit the high points of how muscular dystrophy has directed my path. Even though I try not to let my disability control me, I can’t help but let it have some influence over my choices. At this point, though, I don’t really see my differences as much anymore. What seems odd to someone watching me, is just normal, everyday life to me.
There was a time that my pride was in control, dictating everything I did, and keeping me aware of how different I was from everybody else, how broken I was. Then, one day, the weight of carrying all that baggage finally got to be too much. It was time to take a load off, so I sat down, and life has been much better since I did.
The View From My Seat 
Thanks so much for writing this! Molly at my local MDA office gave me the link to your blog and I hope to read it all. I too found embarrassment to be the most restricting factor when I started with MD. I hid out, like you, for two years. I know you and I aren’t the only ones to experience the limitations of embarrassment and I’m sure this series of posts will be very helpful to those who are going through that emotion.
Thanks Again!
Ben
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