Why telling your caregiving story matters
Our experiences + our voices = advocacy
Hello KIRC family~
Greetings from the midwest - St. Louis, Missouri to be exact!
I’m writing this from my hotel room, not far from the iconic St. Louis Gateway Arch, which I can see from my window. I didn’t know this, but it is the tallest monument in the country - wow!
This morning’s view comes on the heels of having the pleasure and opportunity to speak on a panel Friday at the Association of Health Care Journalists annual conference.
Hundreds of national, regional, and local journalists from newspapers, magazines, blogs, newsletters, radio and a few television reporters - are all gathered discussing health care issues facing our country.
One of my big takeaways from several of the sessions, was a reminder to everyone that health challenges, disease, research, treatments, and cures do not care whether any of us vote ‘blue’ or ‘red.’
However, policies driven by those we put in office can and do impact many health aspects of our lives. A common theme I heard throughout the day was this:
Get involved with issues that impact your daily life on a local level and pay attention to the unique and specific needs, services, policies, and providers within YOUR community.
What works for you and your family may often boil down to getting involved where you live and being willing to raise your voices.
Therefore, as caregivers - family or paid - I believe we owe it to our family members, colleagues, and those who will come after us, to share what we have learned.
Whether that be:
Navigating hospitals and doctors
How to rig an item on your loved one’s walker for increased safety
Steps taken to improve bathroom safety
Questions you have learned to always ask care providers
Difficulty in using products perhaps not designed considering an aging population and/or incorporating technology
Experiences of how well (or not) your employer has supported you during this journey
Whatever it is - share your experiences with almost everyone and anyone you interact with.
Why? Because many of these topics are those journalists may wish to cover, but often have a difficult time finding the ‘real’ person to put a face and name to a specific issue.
When all of us as caregivers are willing to speak up and point out the nuances of our daily lives and all the nitty-gritty of what caring for our loved ones mean, then more voices can push for change.
A brief overview on my observations and thoughts about caregiving based on my session, entitled: The biggest untold story in health care: 53 million family caregivers.
I had the honor and privilege of joining the panel alongside Jennifer Olsen, CEO, Rosalynn Carter Institute for Caregivers, and family caregiver and entrepreneur, Rey Castuciano, who joined virtually. Our moderator, fellow journalist Kat McGowan guided us through the sessions.
There were about 25 journalists in the room. Most were women but there were a few men as well. Most were White. I saw many nodding heads in agreement during the presentation, which tells me some have had personal experiences with caregiving realities.
Here is why I believe the demos of who captures and tells stories matters
There are dozens of nuances that impact caregivers specific to geography. The difference of access to services varies from urban to rural communities. For instance, I always include in my presentations the challenges of limited internet connectivity.
You may already know this, but if you don’t - many of the various in-home alert buttons which allow someone to call for help do not work if you have weak or no cell service in your home.
Many policy decisions are often crafted in metropolitan regions where even the concept of lack of internet is about as foreign as say…living on Mars!
Sure, I know this newsletter is digital, but that is one reason I am working hard to get in front of more journalists. I remind folks that when it comes to rural caregiving, a one-size-fits-all solution - simply may not fit.
Also, the hurdles faced by many families of color are often much different than those encountered by others, and research backs this up.
That can include access to care, equity, quality of services, culturally appropriate interaction, and staffing. In some cases, simply being treated with respect by those in the medical field can be a difficult proposition.
So think about it: If the bulk of journalists seeking out information and stories to inform and guide us are White, then many of the REAL hurdles encountered by a large portion of the non-white population may not always be addressed.
Don’t get me wrong. I’m not saying our journalists are not doing a great job covering issues. Quite the opposite. I am confident all of these journalists are well-qualified and top-notch! But let’s help them to include all voices and backgrounds.
Consider this: if the majority of those asking questions do not fully reflect the tapestry of colors of our nation, then they likely do not have a ‘lived experience.’ It can be difficult to truly understand what it means to navigate the care system as a family of color (or with specific religious and/or cultural beliefs and practices). One might not seek out stories because one simply doesn’t know those issues exist.
This is also a Call to Action for fellow journalists of color. Where are you? I encourage you to get more involved with various associations and organizations, pitch more of these issues, and produce stories. The public needs more of us involved in covering health care beats, especially stories surrounding our aging population. Need story ideas or an interview? Reach out - I can help!
You can also find me on FB @Julia Yarbough Media Group
Because of Keeping It REAL Caregiving, I have been able to include many of your personal experiences into articles, and have also been able to get that information directly to some of those working to craft policy.
Folks, the KIRC project is my passion work. Many fellow journalists here were surprised to learn that this is not my full-time job; that no other agency or organization is paying for creating this content and outreach. That also allows me to KEEP IT REAL.
If you would you like to help me continue this momentum, I welcome your support and would be honored! Here’s how you can help:
Consider upgrading to a paid subscription right here at Substack.
Visit the Keeping It REAL Caregiving website for additional opportunities to offer support with an easy-to-use QR code.
Are you a part of, or lead an organization which is seeking a moderator or speaker for an upcoming event? Do you need a writer and audience for a sponsored article to share your program, services, or information? Learn more on how I can assist.
*Details on increased advocacy
*KIRC meets a national figure - the former U.S. Surgeon General! Our conversation and why it matters.
Until next time~