I didn’t really start using the term “disabled” until this past fall even though I have had severe scoliosis and post-surgery pain and limitations since I hit puberty. The first time I used it was when I needed to be excused from Grand Jury duty. Up until then, I had organized my life as a college and then graduate student (with a rough year working in between) to accommodate my disabilities without having to ever formally register as disabled or ask for accommodations.
But the summons came near the end of my graduate student career when I knew that I couldn’t keep ignoring my body and pushing myself past my endurance. I was starting to have to call in sick more and more and cutting out all nonessentials from my daily routine, which included cooking, exercising, and seeing my therapist and chiropractor. Everything that was not teaching or going to class.
I wrote to my primary care provider at the university and explained my predicament. There was no way I could fulfill the requirements of jury duty, not without frequently calling in sick to recover from the full days sitting in a chair that the summons described. I felt at once lazy and weak and also like a pretender: calling myself disabled when I look fine and people probably wouldn’t guess that I struggle with chronic pain and fatigue stemming from my two scoliosis corrective surgeries in my teens.
This is an internal struggle that I’m still working through today. My back isn’t the only chronic condition I have—I also have migraines, OCD, anxiety, and currently am dealing with an inability to retain iron, the cause of which the doctors have not yet been able to identify. All of this means that I need a lot more downtime to recover and rest than most people.
It’s not unusual to have multiple chronic conditions, especially mental illnesses and physical illnesses. Additionally, it’s not a coincidence that I began to display OCD symptoms as a child when I was wearing a brace to correct my S-curve (to no avail). The obsessive hand washing and knocking on wood helped me feel like I had control over something, even if eventually these and other rituals were things that I hid for years until I couldn’t anymore.
Asking for a formal letter to be disqualified from jury duty for life was the first step I took admitting that I am not like others and have different needs. Eventually, I was able to leave my graduate program because my physical and mental health was suffering too much. Now I work from home, often in the evenings and nights so I can use my days to go to doctors’ appointments, see therapists, and exercise to strengthen my body to prevent as much decline as I can as I age.
As a result, using the term “disabled” feels right now. It means that I am part of a community of people who have similar struggles and experiences, even if we do not always meet in person (thank goodness for the internet without which my life would be much more difficult). It doesn’t mean that I am only someone with disabilities (no one is) but that I recognize that this is a big part of my life and identity.
At thirty, I have been managing my conditions for most of my life. I grew up disabled and I have become an adult disabled. I have no idea what it is like to not be disabled, nor will I ever. It is time that I embraced this term. Maybe telling my story will mean someone else will have less of a difficulty identifying as “disabled.”