My (Library) Life with Invisible Disabilities, by Jessica Schomberg

My first job in libraries was as a page in a public library. Shortly after I started, a librarian tried to have me fired because I have diabetes. This isn’t speculation, this was the actual reason given. And while this occurred after the Americans with Disabilities Act was passed, it was well before the passage of the 2008 Amendments, which explicitly covers people like me, who can mitigate our condition with medication. Fortunately for me, the library director had been diagnosed with diabetes the week before, or my life story might have gone in a very different direction.

(Are you wondering, dear reader, whether I got diabetes because I’m an “innocent victim” or because I “deserved it”? You’re not the first. Keep reading.)

This blog post was prompted by several things. By Ta-Nehisi Coates’s  Between the World and Me, which presents an embodied view of discrimination. By a blog post by Netanel Ganin (@OpOpinions) in which he talks about disabilities as a social construct rather than a medical one, a post which has caused me to completely rethink who I am in this world. But it was mostly due to Jessica Olin’s use of anime eyes in her call for blog posts. Who can resist anime eyes?

How do you cure a social ill? How do you define people with disabilities? How do you make libraries accessible to people with disabilities? I have struggled for a long time about whether or not to identify as disabled. By calling myself disabled, am I being disrespectful to my sister, who has very visible disabilities and whose economic and career prospects are impossibly constrained? I have a job that I enjoy: I can accumulate savings: I can “pass.” And after all, it’s only when my body doesn’t work “normally” that I feel disabled… or is it?

About a decade after I was not fired from my first library job, after receiving my shiny MLIS, I was looking for full-time library jobs (like you do). And one of the people who worked at one of the places I interviewed told me not to disclose my medical history or I wouldn’t be hired. Not because I wasn’t qualified (I was), not because I didn’t have a good performance record (I did), but because I occasionally need to take time to keep my body working in its ideal condition and that makes people uncomfortable.

(No, dear reader, I’m not going to name that library. Just imagine it’s where you work, because that’s close enough to the truth.)

Now, fast forward another decade, and I am employed in a satisfying career and now also supervise, mentor, or otherwise provide leadership to a team that includes other people with disabilities. Knowing what I know about living with my own disabilities, living in a world where I am/we are repeatedly identified as sub-optimal, what does that mean for me-as-leader? It means:

1. Recognizing that control is an illusion.
2. Recognizing that different people with disabilities are first and foremost different people. Not all people with disabilities are magically going to get along. Not all disabilities are the same. I try to go into conversations by asking what people need to succeed, what impediments they’re dealing with, and by discussing work expectations of ourselves and others. If someone doesn’t trust me enough to share that, I try to work with people they do trust to make sure they have the resources and support they need even if it’s not coming from me. To re-state: making sure that the people on my team have what they need to do their jobs is more important than being either rule-bound or being recognized as their rescuer.
3. Recognizing that many of us have swallowed the idea that productivity is more important than people. [Editor’s Note: Yes!] This sometimes means explicitly pointing out when work expectations are unreasonable, or harmful, or cause us to miss opportunities. If we’re not willing to examine how some of our practices exclude co-workers from full participation, how are we going to be mindful of our users? And vice versa.
4. Recognizing that I’ve swallowed the same delusions that non-disabled people have. From another angle, recognizing that I’m part of my team. My energy level varies greatly depending on what’s going on with my body or how untenable I’ve let my schedule become. I have spent decades trying to “pass” or “overcome” my disabilities. I’m not sure that the profession  would have let me in if I hadn’t done those things, but now that I’m in a leadership position I feel an obligation to call out that expectation. That means letting my coworkers who have emotional leadership skills do that work without feeling the need to be Mr./Ms./Mx. Amazing Perfect Leader. It also means allowing myself to take the breaks I need without beating myself up. Because I’ve internalized those messages about normality and productivity, this is sometimes incredibly hard for me. It is thanks to many kind, generous, and sensible library folk on Twitter that I’ve been able to make progress on this.
5. Resisting the urge to bop people on the nose when they say “everyone has a disability.” No. They don’t. I suck at math, but I haven’t been almost fired for sucking at math. I haven’t had to fight with insurance companies for the medicine that keeps me alive because I suck at math. I haven’t had to restrict my activities and monitor every aspect of my daily life because I suck at math. I have to do all that because my immune system killed my pancreas.

(We’re at the end, dear reader. And going back to the first question, I’m not a victim unless you make me one. And no one deserves diabetes, or any other type of chronic illness.)

For more on this topic, see Susan Wendell’s The Rejected Body: Feminist Philosophical Reflections on Disability.

Jessica Schomberg is currently serving as Library Services Department Chair at Minnesota State University, Mankato, where her other hats include Media Cataloger and Assessment Coordinator. She tweets as @schomj.