ID: 2 adults with 2 young children on their backs.
Hi, It’s Kim and I’m thrilled to announce that I’ll be presenting at the upcoming Use Your Voice: Advocacy Strategies for Children’s Vision FREE webinar!
Join Prevent Blindness and the National Center for Children’s Vision and Eye Health on Wednesday, June 4, 2025, from 2:00 p.m. until 3:15 p.m. ET for a 75-minute webinar Use Your Voice: Advocacy Strategies for Children’s Vision. In this webinar, participants will gain a deeper understanding of the advocacy process; the value and impact that individual and community voices have on the advocacy process; and how to effectively advocate for public policies that govern health care, eye care, and school systems to ensure responsiveness to children’s vision health needs.
Hi, it’s Kim and that’s me up in the hot-air balloon flying over the Sonoran Desert. It was a bucket list adventure marking a major life event: Divorce.
A colorful hot-air balloon soars above a desert cliff covered in saguaro cacti.
One month shy of our 28th wedding anniversary (31 years together), Chris and I amicably parted ways. In 2009 I got sick with a serious autoimmune disease and I thought my life was, literally, over. Thankfully, I found a great rheumatologist who improved my quality of life but fatigue, malaise, and the ongoing cost of treatment took a huge toll on our relationship.
Then in 2012, when our youngest son Kai was ten, a retinal specialist diagnosed him with progressive sight loss. We were overwhelmed, grieving and ignorant of disability models (medical/social). Over time, we realized that the social model of disability felt right to us. We believed that the difficulties encountered were not because of my illness or Kai’s blindness, but because of the lack of accessibility and social support for disabled individuals. If you are new to all this, I highly recommend Emily Ladau’s book, Demystifying Disability.
We quickly found out that advocating for a blind child’s education is a challenge. Blindness is rare and certified teachers of the visually impaired are in short supply (and underpaid). Plus, school administrators don’t want to allocate their budgets to pay for braille or assistive technology for a single student. They’d prefer to use funds for something that multiple students will utilize. So, I used my extremely limited energy to hold our rural school district accountable to providing appropriate accommodations. (I fought like hell.)
My goal: To ensure that Kai had access to materials at the same time as his peers.
To be clear, there were other marital issues but the stress of my own disability and the complexities of disability parenting were major stressors. Thankfully, both my boys (Cash & Kai) are happy, independent adults now and I can focus on my own health, wellness, dreams, and goals.
So as an aspiring author I embraced Nora Ephron’s words, “Everything is copy” and publicly committed to unpacking the research about the 87% divorce rate between parents of disabled kids. I read primary research, personal essays, articles and listened to podcasts and then…
Hi, it’s Kim and I want to tell you about an important piece of legislation called the Early Detection of Vision Impairment (EDVI) Act. Did you know that public school children receive federally funded hearing screenings? The EDVI Act would provide vision screenings, too!
Why is this important? Well…
My 10-Year-Old Son Was Blind and No One Knew!
In first grade, I noticed that my son kept pushing on his eyes and pulling at the lateral corners. Eventually, the area around his eyes became bruised. The doctor said it was allergies and prescribed over-the-counter medicine, but it got worse. Click here to read my full essay about the EDVI Act.
Want to know more? You’re in luck! I recently had the opportunity to chat with Julie Grutzmacher, Director of Patient Advocacy and Population Health Initiatives at Prevent Blindness. In our discussion, we talked more about EDVI and I shared a list of questions I wished I had asked Kai’s first eye doctor. Check out Episode 2 of the Focus on Eye Health podcast hosted by advocate Christopher Hord. Click here to listen.
Would you like to support the EDVI legislation? Click here to learn how you can help because your voice matters! And if you’d like to start using your experience and voice for change, please check out the the ASPECT Patient Engagement Program. I learned how to confidently and succinctly share my family’s story to a wide-range of audiences. I had years of experience mentoring other families, and the IEP process gave me plenty (read: more than enough!) opportunities to advocate for my son’s accommodations, but ASPECT gave me the tools to push for change on a state and national level. I highly recommend this program to anyone who wants to tap into a powerful community of change-makers and flex their advocacy muscles.
Do you want to become a stronger blindness advocate? If so, click here to learn more and apply. Be sure to tell them Kim Owens sent you!
In the month leading up to the kick-off of the 2024 Paralympics in Paris, Navigating Blindness featured sixteen blind and low-vision athletes. These athletes shared their adventures and their thoughts about why it’s so important to give disabled children the opportunity to participate in a wide range of activities. Below you will meet the participants and read about how staying active helped them overcome adversity.
Our very own Kai Owens who lost his sight at the age of ten to ABCA4 retinopathy and autoimmune retinopathy shared a short video of himself skimboarding at our local beach. For him, watersports relieves anxiety and helps him feel included with a great group of ‘beach’ friends he grew up with. (You can watch him skim by clicking here.)
Kai also shared three videos of himself from a brothers’ trip to the Oregon Coast. In one video, he is seen crossing a stream on a large fallen log by navigating with his white cane. (Click here to watch.) In another video, he’s carefully navigating across a beach filled with boulders. (Click here to watch.) In the last video, Cash and Kai are at the summit of God’s Thumb formation. When we asked if it was scary Kai said, “Yes, but the fresh air, elevation changes, sounds of the wind and waves, and being with Cash was great! I crushed it!” (Click here to watch.)
Early on our family discovered that brothers’ trips were a great way for the boys to bond while doing activities they love. Their first brothers’ trip was to Erik Weihenmayer’s NYC Summit! Speaking of Erik, we featured him, too!
Erik Weihenmayer’s blindness was caused by juvenile retinoschisis, which affected his vision from birth and eventually caused him to go completely blind by his early teens.
Navigating Blindness 