Lessons I’ve learned about advocacy and disability accommodations
When people who don't understand chronic illness offer harmful pushback
Over the years, I’ve had many experiences with disability accommodations, for better or for worse. I was born with cystic fibrosis (CF) and have had health challenges my entire life. After my double-lung transplant seven years ago, my health improved in some areas and declined in others. But one thing has remained consistent: My disability requires accommodations for me to attempt to function at the same level as able-bodied people.
Some people have questioned the validity of my disability because I look healthy. Having an invisible illness has made it extra challenging to be taken seriously.
My first experience with disability accommodations was in college. Doctors wrote letters stating that I required more time to complete assignments when I was sick or hospitalized. But I received pushback from professors who simply didn’t get it.
One told me to get some rest and take vitamins, as if that would cure my CF. Another marked down my grade because he “knew” I had the potential to finish assignments, even when I was sick. A third professor required me to explain how hard my life was in order to determine whether my accommodations were valid.
These people planted some rotten seeds that made me feel like I should’ve been able to do more than I did, despite being so sick. Even though my classmates weren’t fighting a genetic disease, it just made sense that I should be held to the same standard as able-bodied students, right? (That’s sarcasm, by the way.)
Cultural conditioning made me believe that being sick was unacceptable and that it wasn’t OK for me to ask for what I needed. The expectation that I could perform at the same level as those who didn’t have CF was deeply ingrained in me and led to constant external pressure to keep going, no matter how sick I was. This narrative was reinforced when I was fired for being sick, which pushed me to work myself nearly to death before I had my transplant.
A mile in someone’s shoes
We don’t know how hard someone else’s life is until we’ve experienced it for ourselves. Even then, everyone’s perspective is different, so in my opinion, listening to someone describe their personal experience is one of the greatest gifts we can give them.
Since college, I’ve had several instances in which my disability wasn’t acknowledged or accommodated. Learning how to advocate for myself has been one of my greatest life lessons.
Being supported by medical professionals is crucial. Their documentation is key to legally holding others accountable for accommodating disability needs.
Validating my own health experience despite being misunderstood by others is also essential. That’s strengthened my ability to articulate my needs and prevented me from questioning whether I need the extra help. I’ve learned that I don’t need to convince anyone that my needs are valid, because no one knows what it’s like to live in my body. Therefore, I don’t need to justify my disability to anyone.
When I run into roadblocks, it’s important that I don’t give up. Finding people who will listen and take my health seriously has been vital. They’ve been monumental to having my accommodations honored.
I imagine that if everyone had honored the disability accommodations I had back then, I wouldn’t have gotten so sick. I wouldn’t have pushed myself past my body’s limits just to be accepted or to meet people’s expectations. I wouldn’t have been shamed for taking longer to complete assignments when I was in the hospital, nor would I have been fired because of my health.
If I could tell my younger self anything, it’d be to honor my body and ask for what I need to accomplish what able-bodied people can do without help. I’d tell younger Lara to stand up for herself and hold others accountable when it comes to honoring my disability accommodations. And I’d urge her to fight for her rights, no matter what the cost, because it’s worth it every time.
Note: Cystic Fibrosis 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 Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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