Treatment VS Cure: Why Language Matters

This is an important topic, let's get into it. ?

The language that is often used in campaigns around disability, especially retinal degenerative conditions, is centered around fighting for a "cure". The message is: “A cure is in sight.” or “Until there is a cure.”

Here's what doesn't sit right with me...

1. The word "cure" is very loaded for those of us living with IRDs (inherited retinal diseases). Most of us have been fighting for a “cure” or been promised a “cure” for the greater part of our lives. I have seen the carelessness with which our hopes and expectations have been handled. I do believe that we are getting closer to finding treatment to stop further progression of vision loss and even the ability to nourish very sick cells back to life — this is not a “cure”.
2. Using the word “cure” also carries a heavy undertone that we need to be “fixed” or that until there is a “cure”, we are not completely whole, and therefore our ability to live a full and meaningful life is limited or compromised.

The language we use is important because we are talking about people, not simply a disease. ??

I encourage all researchers, scientists, clinicians, parents, loved ones, and related organizations to be conscious and intentional about the language we use and the humanity beneath it all.

Advocating and raising money for treatment while also empowering ourselves or our loved ones with IRDs to access the resources and tools to accomplish our goals and live meaningful lives can and must coexist — they are not mutually exclusive.

Feel free to share your thoughts with me in the comments!