A few weeks ago, I had the opportunity to participate in In Our Own Words: A CF Day Of Advocacy — a chance for adults with cystic fibrosis to meet virtually with congressional staffers in Washington, D.C., and advocate for legislation to help improve the lives of CFers throughout the United States. A fellow CF adult and I spent the day connecting with staffers representing congresspeople from Utah and Oregon.
We each shared with them our own personal stories of living with cystic fibrosis and the unique challenges we each have encountered. At the end of each meeting, we called on the staffers to share information about the PASTEUR Act and HELP Copays Act with the legislators they worked for, in the hopes they will help champion these bills through the legislative process.
Being able to share information about these vital bills with those who have the potential to enact change was, without a doubt, one of the most wonderful and empowering volunteer opportunities I’ve ever had in connection with CF. Although this was my first time participating in a CF Foundation advocacy event, I have been heavily involved in disability-related political advocacy in the past.
One thing I have learned in my advocacy work is that the number one best way to help persuade others to support necessary legislative changes is by sharing personal stories. Each staffer that I met with thanked me for the stories I shared. As we spoke, I could see emotion on many of the staffers’ faces. One person mentioned that before our meeting, he had had no idea how much these bills could improve the lives of people living with cystic fibrosis and other illnesses. All of the people we met with, from both sides of the political aisle, were deeply grateful for the vulnerability and honesty with which we shared our stories.
In the United States, as well as in many other countries in the world, we are experiencing an unprecedented degree of political polarization. The rhetoric in our culture is strident, degrading, and dehumanizing, and many people have lost the ability to have cordial conversations with those with whom they disagree politically. For those of us living with life-threatening illnesses and disabilities like cystic fibrosis, political advocacy is often not optional. Many of us are drawn into advocacy because living with a disability puts you at the mercy of health care legislation — often one of the most controversial types of political debate.
Few things have the power to bridge this political divide, but as a storyteller and a disability advocate, I truly believe that when we allow ourselves to be vulnerable with others and share our personal stories, we have the potential to touch hearts and make change.
In my own experience, I’ve learned that very few people truly understand the scope of the financial, physical, and emotional burdens that living with CF creates. I have seen many times the shock in others’ eyes when I talk to them about what my annual medical care costs or how a simple cold always becomes an exacerbation for me.
Like many people who work in health care advocacy — especially those of us who have marginalized identities like disability or chronic illness — sharing my story over and over can be exhausting. It’s difficult to find my vulnerability met with disbelief, dismissal, or even rudeness. In the past, I’ve had times where even close friends and relatives have pushed back on the personal stories I’ve shared, disregarding the way that public policy intimately affects my life, and sometimes even endangers my health. It’s tough to feel like the world is full of callous people who are unwilling to care for the lives that hang in the balance when political decisions are being made.
During times when I have felt burnt out by political activism, I’ve found it helpful to read the words of activists involved in past activist movements, such as the civil rights movements of past decades, such as the AIDS activists of the 1980s and 1990s, and disability rights movements such as the 504 Sit-In of 1977 and the Capitol Crawl of 1990.
Two themes I’ve found to be universal from studying these movements is the idea that a group is stronger and more effective than an individual, and that it’s important to balance emotionally taxing political advocacy work with collective joy and celebration.
For me, being a part of the online CF community is a big part of how I stay hopeful and positive, even when there are moments where it feels like nobody is willing to listen to our stories.
We are strong when we share our stories — and we are stronger together than we are apart!
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