Does my inability to work mean I am disabled or differently abled?

Pain wakes me at 3:18 a.m., reminding me that lupus stopped me from working.

“Yeah, I know,” I sleep-whisper and stare at the digital clock until box breathing cools me back to sleep.

An hour later, 4:30 a.m. is on the clock, and inner-me rebuts, but it didn’t end my career.

Hours later, when I’m fully awake, the sleep-talking floats in my memory more epiphanous than I remember feeling it to be during the night. It was true. Lupus hadn’t ended my career, and it hadn’t killed me.

I’m winning. I’m celebrating.

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What label fits?

As a person living with a debilitating, chronic, incurable condition (which I abhor admitting), I’ve entered the ominous phase of addressing, facing, determining, acknowledging, denying, and acquiescing to an official disability status. Thoughts of bearing this truth linger and are pretty inescapable, which was probably why sleep ushered in the unconscious dialogue about my career.

I had the same questions many of my allies in lupus support groups shared. Can I work? What are my body’s limits in performing a certain kind of work, and for how long and under what conditions? Should I disclose my lupus as a disability even though it isn’t a threatening hindrance between flares? Is it honorable to start employment when the propensity to fall sick is greater for me than for another qualified candidate? Is a job worth pursuing if the roller coaster of disease repeatedly knocks me off course? What precautions do I begin to take so that other conditions within the workplace don’t trigger flares beyond recovery?

The questions are continuous, especially when lupus has waned and a sense of strength and victory leads me to believe my life has returned to normal. Then I see the checkbox on job applications that ask, “Do you have a disability?” Am I disabled if I don’t receive Social Security Disability Insurance benefits? As it relates to a job, who determines if I’m disabled?

In my groups’ conversations about returning to work and holding on to careers, we attempted to understand disability language and find identity. Within disability language are labels like “medically disabled,” “physically disabled,” “diverse ability,” and “differently abled.”

I hadn’t connected any of these labels to the disability path I’d just entered. And I wasn’t going to attach my identity to any euphemism that felt awkward, ambiguous, or condescending. In different ways, they all felt that way.

I’d never heard “differently abled” until Delarious O. Stewart, a Dallas-based licensed professional counselor-supervisor, posted it on Facebook two years ago.

According to the National Center on Disability and Journalism:

“This term came into vogue in the 1990s as an alternative to ‘disabled,’ ‘handicapped’ or ‘mentally retarded.’ Currently, it is not considered appropriate (and for many, never was). Some consider it condescending, offensive or simply a way of avoiding talking about disability. Others prefer it to ‘disabled’ because ‘dis’ means ‘not,’ which means that ‘disabled’ means ‘not able.’ But particularly when it comes to referring to individuals, ‘differently abled’ is problematic.”

As I’m writing this column, the hashtag #DifferentlyAbled shows up in 145,000 posts on Facebook and 209,000 on Instagram, and Reddit had hundreds of threads with thousands of comments. To me, that reveals an ongoing debate about which terms to use when referring to people with a disability. In his YouTube video, “Don’t say ‘disabled’. Say ‘differently abled?’,” filmmaker Jeremy Andrew Davis — who is disabled — breaks down this debate in a particularly honest and thoughtful way.

This column is more of a question than commentary for the global lupus community.

As a person living with lupus, do you answer “yes” when asked if you have a disability? Are you differently abled? What is your distinction between the two? And if you were to return to part-time work today, would you disclose any medical diagnosis? If lupus has prevented you from working full time, does that mean you’re disabled? Please share your thoughts in the comments below.

Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to lupus.