“Are you a visually impaired person who just does not feel that there are any opportunities open to you? Are you a parent of a visually impaired young person, and at a loss for how to encourage your child to believe in themselves? Are you a charity that works with visually impaired young people and believes that hearing experiences of others will help inspire your youth group, or individuals and families you work with? …”
Here is the link to the book “Emerging Proud Through Eye Sight Loss” that launched on World Sight Day! Kai is one of the story contributors.
About the launch video: Reposted from EyeInspire2020
Join us to celebrate the Eye Inspire book release on WORLD SIGHT DAY 2020 at 1pm ET (6pm BT). Featuring some of the amazing visually impaired story contributors, talking about their experiences with sight loss and amazing achievements, plus their involvement in the Eye Inspire project as a whole. Also news on how the book will benefit young people with sight loss and how the project will develop further. Expect oodles of inspiration and VIPs!
Kai speaks at 22:30 but the event is filled with awesome guests!
Our special guests span the globe, from USA to Australia! Spread the word and join us for a super inspiring live stream event full of great interviews with amazing VIPs. Featuring Kai Owens, Jonathan Goerlach, Nicole Kada, James Laird, Nigel Limb, Alice Cadman, Bari Azman and Daniel Williams, plus hosted by our founder DJ MissChivers. Nothing is impossible.
To wrap up our month of braille literacy guest blogs, I’ve asked Kai to share his thoughts about braille literacy. Kai has helped several families, with children who are losing their sight, to understand how braille is helpful & relevant in 2020. Kai is now a college-bound senior in a mainstream, public high school and he is at the top of his class. Here’s what he wants you to know about braille.
Feel the Facts by Kai Owens
30% of all blind people are employed, which means 70% are not. 90% of the employed are braille readers. This means that if you do not read braille then there is only a 3% chance that you will be employed in your lifetime. THREE PERCENT!
So, for every 100 blind people who do not read braille there will be only 3 who are employed.
When Kai was 10 and first diagnosed with degenerative sight loss, he was scared. He began to have trouble seeing at night and his first reaction was to build a nest on his bed out of blankets and pillows. One night as mom was tucking him into his nest, he said that he felt bad for all the kids around the world who do not have comfortable places to sleep. Mom had no idea how to tackle that issue on a global scale while also helping her son deal with sight loss, but after many conversations together: Kai’s Comforts was born. Kai decided to collect new, soft, highly tactile pillows and blankets from his community to deliver to his peers who are living at schools for the blind. At first, it started out as a great way for us to do something positive, and connect Kai to peers dealing with sight loss. His first collection was delivered to kids at the Georgia Academy for the Blind. A school for children who are blind and visually impaired about 3 hours from Kai’s mainstream school. The first delivery was a huge success the kids were thrilled to receive their comfort items, and Kai got to meet lots of kids who were “like him.”
I keep hearing that 2020 is the year of “#Acceptance” so today I’d like to respond to a question from a friend who asks: “You seem to have fully accepted Kai’s sight loss. How do you think you were able to do that?” Continue reading “The Mystery of Acceptance”→
Hi, I’m Kai Owens. I am a 16-year-old athlete, drummer, and mainstream high school student. I’m also legally blind from Retinitis Pigmentosa. I’ve done a lot of Orientation & Mobility training locally, and I’ve also traveled extensively in the US and Vancouver, BC. I use my mobility cane at all times and I’ve recently been approved for a guide dog. I’d like to share a few of my observations about when drivers and mobility canes intersect.
At some point, most sighted people have been driving and seen a blind person and panicked. Some of the encounters are full of mistakes that really do not make any sense. I’m going to walk you through a few common mistakes drivers make in hopes of raising awareness. Continue reading “When Drivers & Mobility Canes Intersect”→
The following post was originally written by Kim Owens for FamilyConnect Newsletter:
At the age of 10, my son, Kai, began to lose his vision to an aggressive form of Retinitis Pigmentosa (RP). My dreams for his life were shattered with the doctor’s words, “blindness, no known cure…” I was blind-sided by his diagnosis and could see only darkness. Continue reading “A New Way to See”→
Navigating Blindness is thrilled to launch part 2 in our series “It Takes a Village.” Today we will hear from Wendy Rankine as she describes who’s in – and who’s out – of her son’s village including doctors, teachers, coaches, and family.
We’d love to hear from you too. If you’d like to share your story, please reach out for specifications using our contact form. Thank you!
Guest post by Wendy Rankine
Our oldest son, William, was born with LCA. We were VERY fortunate that he was diagnosed quickly. At William’s 3-month check-up, our pediatrician immediately sent us over for William to be evaluated by an older Ophthalmologist. We are in Central Georgia, and this local Ophthalmologist listed 5 things on his referral note to a Pediatric Ophthalmologist at Emory in Atlanta that William could possibly have. LCA was one of those 5 things. As soon as I read the description of LCA, I knew that is what William had. At 5 months William was diagnosed by the Pediatric Ophthalmologist at Emory with LCA and by the time William was 13 months old genetic testing confirmed it. William does not have any other issues developmentally. We didn’t need big-name hospitals, we just needed wise old doctors who had seen a lot in their careers that could quickly and easily guide us in the right direction. Continue reading “It Takes a Village: Doctors, Teachers, Coaches & Family”→
As the pandemic throws curve ball after curve ball and families and schools struggle to adapt we, at Navigating Blindness, are excited to launch our new series entitled “It Takes a Village.” Today we will hear from Sarah Immerfall as she explains what her son’s village looks like in the midst of a pandemic.
We’d love to hear from you too. If you’d like to share your story, please reach out for specifications using our contact form. Thank you!
As you may know, our son Kai was recently diagnosed with Autoimmune Retinopathy. When we received the new diagnosis we were shocked and we are still adapting to the news. Thankfully, we had already built a strong network through this blog and our social media presence. We reached out to our community and thanks to your shares, our post was viewed more than 8,000 times. Autoimmune Retinopathy (AIR) is extremely rare, but with your help, we were able to connect with 12 people who are navigating AIR and were pointed to a FB Community for Autoimmune Retinopathy with 166 members (#Rare). Becky is one of the people who immediately responded to our pleas for help with an abundance of support and information. I am honored she agreed to share her story here. Thank you Becky.
Guest post by Becky Jayakumar
Hello, I am Becky Jayakumar and I was recently diagnosed with autoimmune retinopathy (AIR). AIR is a rare autoimmune disease that destroys the retinal cells of the eye leading to progressive vision loss. There are different causes of AIR, no set diagnostic criteria, and no standard treatment which makes it a challenging disease to manage.
A year ago, I suddenly experienced visual changes and lost part of my left peripheral vision. Nothing seemed to cause it, nor did anything make it better. That evening, I was hospitalized overnight for an eye ultrasound, brain imaging, and labs and ultimately, these exams came back normal.
Over the next few months, my vision continued to worsen with progressive peripheral vision loss and increasing visual disturbances. During this time, I had more testing than you can imagine with many potential diagnoses which typically eventually got ruled out. My abnormalities included an enlarged blind spot on the left and a slightly reduced thickness of my left optic nerve. My local retinologist and neuro-ophthalmologist weren’t able to do the additional testing to look at function of the eye in NV, so I was referred to Mayo Clinic. Continue reading “Diagnosis of Autoimmune Retinopathy: Becky’s Story”→
We love featuring stories of people making a difference in the blindness community. Kerry and her brother Brian are making waves – radio waves – on their show Outlook. We hope you enjoy Kerry’s post about growing up with sight loss and finding her voice in advocacy.
Guest post by Kerry Kijewski
In disability activist Judy Heumann’s book Being Heumann: An Unrepentant Memoir of a Disability Activist, she says she believes she was meant to have a mother who would not give up on her daughter who was born with a physical disability. I don’t know about that in my case, but I do know I am lucky to have been given the advantages and foundation from my parents. I recognize my privilege, having them firmly in my corner.
This doesn’t mean I have it all figured out (no matter how much I wish I did), even as I am staring down forty in a few short years. I am further along because of the support I grew up with and still count on today. Continue reading “Navigating My Blindness by Kerry Kijewski”→
July is braille literacy month on Navigating Blindness and we are honored to feature a blog post by Elizabeth Symington, CBT. She is a fearless leader in the Braille Community and a dear friend.
My Story of Becoming a Certified Braille Transcriber
By Elizabeth Symington
I was introduced to braille while attending art school in San Francisco, CA. One day while at the library, I discovered a picture book for children who are blind. At this point, I’d never met a blind person, nor did I even know there were picture books for the blind. I was instantly captivated.
July is braille literacy month on Navigating Blindness and today we are excited to feature Alexa Jovanovic, founder of Aille Design!
By Alexa Jovanovic, Founder of Aille Design
Braille is much more than a communication tool. It enables freedom of expression, provides independence and increases literacy. When combined with mainstream fashion, it symbolizes the importance of inclusive representation in the fashion industry and empowers communities to advocate for social justice. Continue reading “Aille Design: Clothing that Speaks”→
July is braille literacy month on Navigating Blindness and we are excited to feature high school student Kaleigh Brendle who successfully advocated for Braille accommodations on the 2020 College Board exams — globally!
Guest post written by Kaleigh Brendle, high school student.
My name is Kaleigh Brendle. I am 17 years old, and since birth, I’ve possessed a condition called Lebers Congenital Amaurosis, which left me visually impaired.
Four of the courses I was enrolled in this past school year are classified as Advanced Placement, or AP, courses. The course curriculums and final exams are created and administered by a corporation called the College Board. This corporation also presides over the PSAT and SAT exams, among others. Under normal circumstances, I receive all my College Board exams in Braille, and before the onset of the pandemic, the AP exams were going to be no different. If I performed well enough on these high-stakes tests, I may receive college credit for the completion of the course. Thus, these exams are extremely influential. Many blind and deaf-blind AP students had Braille specifically stated in their accommodation plans. However, due to the Covid-19 pandemic, the College Board was forced to shorten and digitize their exams. In doing so, they communicated to us that Braille would not be provided this year. For exams that feature maps, coordinate planes, and other highly visual graphics, a “No-Braille” decision meant that these images would not be embossed. One of my courses, AP Biology, is extremely diagram-heavy, so I grew concerned about the prospect of not possessing the visuals in hard-copy format to tactilely navigate. According to the College Board’s website, 65% of my exam score would be dependent upon my ability to successfully interpret a single graphic. The solution that College Board provided was something called Alternative Text, a description coded into an image or graphic so that a student’s talking software will read the written text when their cursor encounters the image it describes. So when an image of, say, a phospholipid bilayer appears on my screen, my software will start speaking at me and reading the description. It became not so much how well I could interpret the image, but how much of that description I could memorize. If a graph appeared on the screen, it would read out every point on the graph, even spelling out the word “comma”. The given student would be inundated with details. We tried to explain to the College Board that providing us with a large block of text was not a substitute for the actual graph. We need that spatial information as anyone else would; the College Board executives were adding another cognitive burden to an already stressful situation. In addition, with the exams being administered through technological mediums, I sought to clarify what would transpire if a glitch were to occur with my accessible software. For instance, what if VoiceOver does not read the question? What if Jaws shorts out my computer during the exam? When posing this question, the response I received was troubling. I was informed that however long it took me to resolve a tech glitch in my exam, I would have that much less time to complete it. If it took me forty-five minutes to resolve an issue, and the exam was an hour in length, I would have fifteen minutes. The suggestion of both a representative and an executive that I spoke to about this was “use a device with less problems”. Unfortunately, in the world of accessible technology, it is impossible to anticipate what devices will pose complications on that given day. Continue reading “We Are Not Blind To Injustice. The 2020 College Board Experience.”→