Does my inability to work mean I am disabled or differently abled?
I'm wondering how to characterize my employment status given my lupus
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.
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.
About the Author
Libby Tamas
For a long time I denied that I had a condition that controlled my body and mind without my consent. I do not see myself as disabled but i just cannot manage certain days of my life or certain activities without difficulties. After many years of hiding my condition from coworkers and manager, I acknowledged and shared with them that I have Lupus. Hmmm, boy did things change. I was even set up to sit by myself instead of my team with no real good explanation as to why. I was treated differently! Not once have i aloud this condition to identify me, and i will not allow others to degrade me for having a condition that is "able different".
Candace J. Semien
Thank you for sharing your experience so openly. It takes a great deal of courage to speak out about lupus, especially in environments where folks can be unkind AND uninformed. The way you continue to advocate for yourself despite unfair treatment is inspiring—and a reminder of how much work still needs to be done to lupus awareness. Your strength in acknowledging your reality without letting it define your identity is incredibly powerful. I am celebrating you, Libby.
Cathy Sturm
Your article stopped me in my tracks!! I usually glance at my Lupus emails, and delete quickly not wanting to give my illness any more attention than it already takes from me. I have Lupus, Sjogren's, Raynaud's, Fibromyalgia, and more. Including physical therapy, I have over 60 Dr. apts. a year. I'm also very committed to nutrition, fitness, and I play fierce tennis whenever I can. I look very healthy, and that is required for my mental health to get me through this. To the public, I do not look disabled, and I've had multiple new Dr.'s say "your Lupus is under control, right?" If it was, why did Rheumatology send me to you! The roller coaster of flares, and sometimes multiple at once as I call "layers", has taken it's toll on my career as a Realtor. In the last 5 years I've gone from having the ability to handle over 35 transactions to where my business showed a loss the last 2 years. I have short term and long-term disability and I am having the hardest time navigating filling it out because of the question "when was the last time you worked?" I am responsible and disciplined to a fault and I work daily but the productivity of my work has declined as a result of all of the above. Not to mention in the last 3 years I have lost 4 Rheumatologists and GP's. I have markers in most specialties that are "stable", meaning they are abnormal but stable so not one of my issues should keep me from working, but all of them together do keep me from being consistent. So, I've been in my head struggling with this topic and disability struggles myself. I agree with what Jeremy Andrew Davis says in the YouTube link you provided. My dad had severe RA and was 100% disabled requiring over 57 surgeries including 5 c1-c2 spinal fusions. I saw him start the first DAV at Indiana University and I've seen someone yell at him for parking in the handicap spot when he walked into a store. I had no idea "differently abled" was even a thing. I'm guessing it came from "everyone has to get a trophy" or they will feel bad, and that giving it a positive spin on the name would make them feel better when in fact, it just dilutes the ability for others to understand reality. It's up to the person with the disability to decide what attitude to bring each day, and for the public to understand some disabilities are invisible. Editing a word alone will not accomplish either one of those mindsets! Sorry for the rant, but Thank You for this post!
Candace J. Semien
Wow, Cathy. Thank you so much for sharing all of this. Your honesty, strength, and resilience come through so clearly. Navigating multiple diagnoses, endless appointments, and the emotional toll of lupus is something far too many people just don’t understand.
You are absolutely right: editing a word won't change how society views invisible illnesses. It takes real stories like yours to shift minds and open hearts.
I hear the frustration in what you're going through with disability forms and trying to quantify something as unpredictable and layered as lupus and coexisting conditions. I am experiencing similar struggles. If only the HR directors and disability case managers would give value to our stories. I appreciate you taking the time to share. Please give me an update soon. All rants are welcomed. :)