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    • #14633
      Bailey Vincent

      I wrote a column this week about my own reaction to the (relatively racist) reactions to a “foreign film” winning The Oscars last week, and my own reflections as a Deaf woman in terms of language and interpreter shaming.

      Although it seems like a leap (it was, but trust me it all connects), I often find this same sort of nationalist-narcissistic thinking when it comes to CF advocacy, as well. I am the worst at this. For example, I will write about the amazing benefits of new medications and how excited I am for my friends’ improvements and progress, without ever thinking about those diagnosed in third-world countries without any sort of CF registry, or clinics, or otherwise.

      Sometimes we talk about breakthroughs and cures from such a first-world (and, in my case, Americanized) perspective, that we forget this is a GLOBAL disease that impacts so many more than those outside of our own bubble. In this sense, or educational and advocacy jobs are truly never done… not until the entire world receives proper treatment and support.

      Question: How often do you think about those with CF with different circumstances than your own?

    • #14634
      Jenny Livingston

      I think about this all the time! I’ve been fortunate enough to form many international CF friendships online, and it keeps me cognizant of the global disparities in CF care. I sometimes feel overwhelmed at the amount of work still needed here in the US in order to make healthcare and treatment accessible for everyone. I get doubly overwhelmed when I think of all the work still needed on a global scale!

      So I guess I have a follow up question: how do we help advocate for those whose circumstances differ from our own?

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