Hi everyone, I’m devastated that the Trump administration’s anti- diversity, equity, and inclusion policies target people with sensory loss. The Department of Education recently used the policy to cancel grants that funded our nation’s major braille training programs. No training = Less braille access.
DIVERSITY: Blind, low vision, and DeafBlind students represent diversity in the general student population.
EQUITY: Blind students have the right to receive educational materials in accessible formats such as braille.
INCLUSION: Our students have the right to be included in all aspects of public life and community.
The Department of Education is using these DEI terms to cancel grants that serve our community! We can’t let that happen!
You may remember, that I fought a vicious battle to obtain braille for Kai’s high school math and science classes. We ‘won’ in mediation, and Kai got what he needed, and we made braille access easier for all students in our district, but now the nation’s current and future braille readers are at risk.
Transitions are hard for everyone, but can be especially fraught with anxiety for blind and low vision students and their parents. I’m excited to introduce you to a valuable resource that can help. MEET EMPOWER VI!
I’ve had the pleasure of contributing two video segments to their program. And I appreciate that they are committed to sharing a variety of perspectives on important topics.
The video below is me discussing the importance of allowing my blind son Kai to take risks. It’s titled, Kim Owens: The Dignity of Risk. It is part of a free course that parents can access by clicking here. If you take the free course, please also take the survey at the end. The data is important in supporting this work.
LEARN MORE ABOUT EMPOWER VI At EMPOWER VI our goal is to support transition-aged students with visual impairment, especially those in rural communities, by providing the tools, resources, and community they need to succeed after high school.
Whether you’re a student, a family member or a professional, we offer free, virtual resources that help bridge the gap between high school and what comes next, including postsecondary education, employment, and independence.
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!
Uber has launched a new program to support service dog handlers.
In simple terms, the program allows service dog handlers to self-identify that they will be traveling with a legitimate service dog. This information will be provided to the driver along with reminders about ADA law and Uber’s service dog policies. Note: Emotional support animals do not qualify and must use Uber pet.
Upon hearing about this new program, Kai’s first question was, “When will the drivers be notified? Because if it’s before they accept the ride, I’ll be waiting much longer.”
Uber’s communications did not explicitly state the answer, so I investigated by going through the process myself.
Three years ago, the Young Visionaries began a mission to educate our community about life as white cane users. What started as a simple walk down Main Street in Grand Junction, Colorado, has blossomed into an inspiring movement of awareness and change. Yesterday, we celebrated that journey with our White Cane Day 2024 event—and what a day it was!
Under the dedicated leadership of Joanne Stamp, Rob Harris, and Erin Allard, this year’s event was a resounding success. Their tireless efforts, along with our amazing volunteers and community partners, made the day exceed all expectations. Together, we hosted a vibrant resource fair featuring more than 15 local organizations. The Center for Independence graciously provided the perfect venue, welcoming over 70 attendees eager to learn and connect.
Hello, again. It is Becky Jayakumar and part one of my autoimmune retinopathy (AIR) diagnosis is available here. Since AIR is a challenging disease to diagnose and manage, there have been some bumps in the road since my last post. Almost immediately after the previous post was published, my third CT scan of the chest showed 3 masses in my right lower lung, which were multiplying (originally one mass earlier in the year) and increasing in size. This prompted my doctor to re-evaluate my PET scan (tests for active cancer) from earlier in the year. While the lung spots did not show activity, they did notice that my thymus was active on PET scan and subsequently, I was referred to an oncologist. Ironically, my oncologist canceled the appointment as I was not yet diagnosed with cancer despite the rationale for the referral was that a biopsy was physiologically impossible. Through connections and asking favors, I got the oncologist to see me later that day.
At this appointment, she was gruff to say the least as I am sure she was mad that I pulled strings to be seen by her. She told me that I would eventually have cancer due to my autoimmune conditions to which I responded “but the question is do I have it now?” She finally looked at my imaging and stated I needed surgery immediately. She referred me to a local cardiothoracic surgeon. To spare some details, I ended up canceling my surgery with this surgeon as I was not comfortable with him (there are only about 100 of these surgeries per year in the US) and received a referral to Mayo Clinic to their thymoma group who scheduled the surgery for a few weeks later.
Luckily, the lung lesions were not cancer and were actually due to my liver migrating up through three diaphragm perforations. Hence during the surgery, they reconstructed my diaphragm and removed my thymus from my heart, aorta, and lungs. There was significant hope from my doctors that the removal of the tumor would halt the progression of my vision loss. Of note, thymomas are notorious for causing another paraneoplastic disorder and removal is often curative. Unfortunately, my vision loss significantly worsened post surgery then eventually a few months later returned to a more similar progression to prior to surgery.
Hello! I’m Regen and I wanted to share my personal story with the rare diagnosis of autoimmune retinopathy (AIR). As a 23-year-old college graduate, the only anticipated stress I had was the start of Physician Assistant school, my next step to eventually diagnosing and treating others. Never could I have imagined the personal medical journey that I was about to embark on.
Bothersome floaters that grew exponentially within a short time frame prompted me for an annual visit to the eye doctor. While my provider reviewed that floaters can be a natural process of aging, her tone changed to concern when my visual field returned with significant blind spots. A negative MRI and uncertainty of next steps led to a referral to Wills Eye in Philadelphia. Initially, I was diagnosed with pars planitis, an inflammatory condition for which I was prescribed steroidal eye drops. Regular monitoring had revealed favorable exams – however, my symptoms were not improving but rather accelerating to include afterimages and strange flashes of color. Infuriatingly, I was told that the stress of graduate school in conjunction with baseline anxiety was the likely cause of such visual disturbances. Feeling unheard and my intuition pushing me to continue to advocate for myself, I consulted with a neuro-ophthalmologist at Wills Eye. Ultimately, he escalated my case and led me to a retinal specialist who formerly diagnosed me with AIR. While I was thrilled to have my concerns considered, this was certainly not the diagnosis I wanted to receive. A rare condition with no cure or consensus on treatment, it was quite the opposite of what I was looking for. After a consult with Dr. Foster at MERSI, a further lab workup was positive for three anti-retinal antibodies and two anti-optic nerve antibodies, further conclusive evidence in conjunction with my prior diagnostic tests and symptoms. I was in denial, but three unanimous opinions and a negative genetic workup later – indeed the culprit was found.
Image of all the adaptive skaters mentioned in the article. They are standing in front of a wall that is covered in graffiti with the word Modern at the top. Many of the skaters are holding white canes. Kai is in a wheelchair and Shane has arm crutches. Thanks for the great article, Kelly!
Navigating Blindness 