Last week, disabled writer and advocate Imani Barbarin created the trending hashtag #WhenICallMyselfDisabled and invited the community to share why they use the term to describe themselves. I started to tweet my reply, but hesitated as I was typing– do I call myself disabled?
What Does It Mean to Be Disabled?
Choosing a single definition of disability is complicated. The criteria for being disabled varies with context. Are we talking about the dictionary definition? Disability as defined by the Americans with Disabilities Act? Eligibility requirements for Social Security disability insurance? If I qualify as disabled under one of these definitions, does it matter if I don’t qualify under the rest?
By the dictionary definition, I am certainly disabled. According to Merriam-Webster, disabled means “impaired or limited by a physical, mental, cognitive, or developmental condition.” The combination of tic disorder, ADHD, and obsessive-compulsive anxiety has limited and impaired me in a number of ways, many of which I was unaware until my diagnosis. I avoid or take extra precautions in crowds, I have difficulty performing physical tasks, and I struggle with executive function. The pain caused by my tic disorder is limiting physically and mentally. By this definition, I am disabled.
I also fit the criteria for ADA accommodations. A disabled person, under the ADA definition, is “a person who has a physical or mental impairment that substantially limits one or more major life activity. This includes people who have a record of such an impairment, even if they do not currently have a disability.” I have some difficulty identifying myself as disabled using the first half of this definition. What exactly constitutes a substantial limitation? On most days, I can do most things for a limited amount of time. While there are things I don’t do because of my health issues– like driving– I’m not 100% certain that I couldn’t do them with time. The terms “substantially” and “major” are subjective, so I fear I’m exaggerating if I include my limitations under this umbrella.
However, there were times in my life where I was undoubtedly substantially limited. For example, when I had frequent panic attacks, I couldn’t leave my house alone without an attack. Because of this, I do feel confident that I am legally disabled as defined by the ADA. In fact, I know that I am, because I received disability accommodations for anxiety throughout graduate school.
Social Security is much stricter in its definition of disability. Only people deemed to be totally disabled are eligible for benefits. While there are many criteria regarding severity and evaluation, the three main determinants for being considered disabled are that “you cannot do work that you did before,” “you cannot adjust to other work because of your medical condition(s),” and “your disability has lasted or is expected to last for at least one year or to result in death.”
Some people might argue that I meet these criteria. In the seven years since completing my undergraduate degree, my medical conditions have left me unable to work or attend school for a combined total of over two and a half years. That’s over a third of my post-graduate life. I have never worked in the same job for more than a year. Based on this information, it would seem that I can neither do the work I did before nor can I adjust to other work. It also appears to be a chronic problem.
Still, I’m not ready to say that my conditions meet this definition of disability. I do believe that I still have the option to have a career if I have the right accommodations. Even if I’m not quite sure what career that might be, the fact that I have an accurate diagnosis for my medical conditions gives me hope that I can find it.
My Experiences with the Term Disabled
By at least two definitions, I am disabled. Why then, do I still feel somewhat uncomfortable with the label?
I’ve struggled to get recognition for the limitations my medical conditions create. The first time I considered I might be disabled was also the first time I left my job in response to my health. I was working at a department store when I started to have severe panic attacks. For weeks, I spent more time crying and shaking in the stock room than I did on the sales floor. To their credit, management was understanding and allowed me this space, but it put a strain on my coworkers and on my mental health, so I opted to resign.
Without an income, I applied for temporary disability insurance through my employer. It should have been a no-brainer; clearly my inability to work was caused by my disability, and I had documentation from my therapist stating as much. Still, I was denied.
Why? Because my symptoms were “self-reported.” Apparently, to access my benefits, I would have to have a panic attack in my therapist’s office to prove my symptoms were real. I felt so discouraged and invalidated that I didn’t even fight the decision.
A couple years later, I started in a combined M.A. and Ph.D. program. It began well enough, but my medication’s effectiveness waned. I was prescribed an increased dosage of my SSRI and almost immediately suffered serious side effects. At the time, the doctors thought it was serotonin syndrome, but my neuropsychiatrist believes it may have been the first major manifestation of provisional tic disorder.
Whatever it was, my work suffered immensely, so I sought ADA accommodations through the Disability Services Office. I was approved for accommodations and fought to catch up in my courses.
However, I learned my efforts had undermined the legitimacy of my condition. Struggling, I requested a grade of incomplete in one of my courses in order to have more time to write my final paper. My professor (initially) denied the application, using my past work as justification:
I understand about the weeks you lost during the semester due to your anxiety. Let me remind you, however, that during those weeks, though you understandably could not be present in class, you produced very good written work and completed assignments for the course.-Professor Who Shall Remain Nameless
I believe this mentality is the same that kept teachers from recognizing my disabilities in school. Despite red flags (chronic disorganization and extreme emotional responses to disapproval, for example), none of my teachers ever suggested I visit a guidance counselor or undergo evaluation for ADHD or anxiety. I was, however, tested for programs for “gifted” students on multiple occasions. I was a high-achieving student. Most things came easily to me, and I suspect those talents eclipsed my struggles.
So, why have I struggled to call myself disabled? I struggle because I don’t think the world sees me as disabled, and to claim my disability might mean making myself vulnerable to their criticism. It may be seen as self-pitying or attention-seeking. It may be seen as trivializing the struggles of others. I don’t want to have to justify my pain anymore or confront the invalidation that comes with it. It’s exhausting and demoralizing, but I’m beginning to think it may just be the reality of a disabled existence.
Disability as Identity
As I explore communities of people with diagnoses like mine, I’m learning that disability can be more than technical definitions. It can be an identity, and beyond that, a community.
My limitations do not define me, but they are inextricable from me. We are the sum of our experiences, and disability has shaped both my experiences and how I perceive them. In the disability community, I find so many shared experiences. They show me that even though I live in a world where I am different, I will never live in a world where I am alone.
When I call myself disabled, I am acknowledging that I have limitations and strengths and that both are a part of who I am. I am not saying that my life has been any more or less challenging than anyone else’s, but I am recognizing the experiences and community I have in common with other disabled people. Even my doubt is a shared experience:
I just want to let other disabled people who are uncertain know that #WhenICallMyselfDisabled, it doesn’t mean I still don’t have complex or confusing thoughts about myself or disability.— Crutches&Spice ♿️ (@Imani_Barbarin) July 5, 2019
It’s ok to feel uncertain.
I am not broken or giving up; I am accepting my brain and body as they are.
Yes, I am disabled, and I’m no longer afraid of that fact.
Do you identify as disabled? Why or why not? Do you have an opinion on my self-identification as a disabled person? Share your thoughts in the comments!