This October marks the 80th anniversary of National Disability Employment Awareness Month, which recognizes the contributions and impact of people with disabilities in the American workforce.
The event was created in 1945 and, for me, became intensely personal in 2011.
On a spring morning that year, I hopped on my bike to visit the farmer’s market, setting off to find asparagus and whatever chance might bring. What chance brought that day was a spill off my bike and a blow to my head (a head that wore no helmet), resulting in a coup-contrecoup that caused a seizure and sent blood gushing from my nose and ears. I woke up in the hospital a few days later and slowly processed that I had been comatose.
For a period following an emergency craniectomy, there was no clear indication that I would ever wake up. With assistance, I was able to sit up and begin the first steps of recovery from traumatic brain injury.
During that recovery, I had to resign from the university where I had worked for 12 years, leaving behind professional initiatives I had launched, managed and grown. I re-learned how to climb stairs and drive. I changed the state I lived in, and I profoundly changed my life. The road to recovery is long. I am on it still.
For some time, the disabling effects of my injury were obvious. I moved and spoke slowly. Severed nerves caused hearing loss in my left ear that makes me an annoying dinner table companion if I am seated to your right. Nerve damage also resulted in loss of a piece of my vision in my left eye. I can no longer pluck a baseball out of the air if it is tossed at me from my left side. My sense of balance was severely impacted. I have a limited ability to stand on one leg. I am left-handed, and my right brain injury decreased the strength and coordination of my dominant hand. My already imperfect penmanship became almost illegible.
These long-term impacts of my injury are losses when compared to my abilities before the accident. But they are disabilities that would have been invisible or negligible in my return to work, where, for instance, I am rarely required to stand on one leg. We encounter such disabilities every day without registering that we do.
In my classrooms, on the first day, I tell the students that I may not see a raised hand on my left and that they should help each other out and call my attention to their classmates who are signaling willingness to participate. They do, and often some of them will, in response, point out their own blind spots or difficulties hearing.
Prior to my accident, I pioneered developments in digitization and in the creation of online information resources. I was an important voice in the development of academic library publishing. And, as this month seeks to acknowledge, I have continued to make substantial contributions to the workplace. I helped scholars realize the potential of sharing their scholarship widely and in innovative formats. I have educated hundreds of librarians, and I now direct the No. 1 ranked library and information science master’s degree program in the United States. I have authored several articles and published two books. All of this has been accomplished despite, or perhaps because of, my non-obvious disabilities.
Shortly after my accident, my then-employer’s risk management office looked at the scores of my cognitive tests and deemed that my executive function was too impaired for me to successfully do my job. When the Social Security administration denied my disability claim (as it tends to do for traumatic brain injury sufferers), it suggested that I could be gainfully employed as a newspaper clipper. But I was apparently not able to run an academic library or a university press.
The opportunities for which National Disability Employment Awareness Month advocates were not available to me.
In 2013, I was hired in a faculty position at the University of Illinois Champaign-Urbana. My salary and my record of scholarship and teaching would indicate to many people that I am normally capable now. Colleagues and collaborators who do not know about my medical history are taken by surprise when I describe my injury and the extent of its impact on my abilities.
During recovery, I had a successful cranioplasty, but my excised skull flap had spent so much time in a freezer waiting to be reunited with my skull that it warped and will never sit flush. I have a permanent indentation that my then-elementary-school son cheerfully described as “Like a cheerio bowl in the head.” To convey the gravity of my injury to a new acquaintance, I sometimes put their hand on the dent in my head, now helpfully covered by hair. There are winces and small gasps in response, but mostly people say, “I never would have known.”
I am normal. I am disabled. Aren’t we all?
Several of the medical professionals with whom I worked with throughout my recovery — a group of people whose intelligence and dedication are an extraordinary gift to those they serve — told me that I was a miracle.
My emergency neurosurgeon told my family that she had never seen a brain so damaged. I am a teaching case for the emergency orthopedic surgeon who patched together my broken clavicle and shattered elbow despite skepticism from his colleagues that I would ever be functional enough to use them. He shows his students a picture of me, playing with one of my children, and tells the students it’s always best to assume recovery.
Another doctor, who questioned whether my treatment was worth the investment, given the extent of damage, called me over for a celebratory photograph when, two years later, she realized I had just beaten her in a neighborhood 5k race.
My story isn’t meant to downplay the damage caused by traumatic brain injury and its lasting impact. I am asking that we not measure our abilities or those of others against some yardstick of normalcy that simply doesn’t exist.
In keeping with the aims of this month, I urge all of us to respect the limitations of those we work with, and, more importantly, recognize their potential. All of them. All of us.
I was, and I am badly broken. A broken miracle. We all are. We need opportunities, in the workplace and in the world, to demonstrate that.
