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”
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.
Continue reading “Feel the Facts by Kai Owens (17)”
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.
The braille picture book is one of my childhood favorites, “A Color of His Own,” by Leo Lionni. The pictures looked like a wall fresco; they rose off the page. Instead of using color, different textures were utilized to describe the pictures. It was also a fun decoding game since the story was in braille and in print. Continue reading “Becoming a Certified Braille Transcriber by Elizabeth Symington, Founder UEB Study Group”
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.”
We, at Navigating Blindness, are strong believers in the power of braille! For the entire month of July, we will be featuring a variety of braille literacy resources for students, teachers, transcribers, and families. Please check out our Instagram and Facebook pages for additional features and posts. Today, we are excited to learn more about Seedlings Braille Books for Children!
Guest post, written by Katelynn Lucas
Community Outreach, Seedlings Braille Books
Have you heard of Seedlings Braille Books for Children? If not, get ready to learn all about this small non-profit in Metro Detroit that produces free and low-cost braille books for children with vision loss. Seedlings’ mission is to increase the opportunity for literacy by providing high-quality free and low-cost braille books for children. They produce three types of books: Print-Braille-and-Picture books for toddlers and preschoolers, Print-and-Braille Easy Readers for beginning readers, and braille books as big as The Hunger Games for ages 6-21. By offering these different types of books, Seedlings is opening up the possibilities for children with vision loss to read together with their sighted family members and peers. The best part about Seedlings’ books is that, thanks to generous grants and donations, they cost an average of just $10 per book! Continue reading “Seedlings Braille Books for Children: A Small Non-profit Making a HUGE Difference”
Kai & I are very excited to share these eleven blogs that are written by individuals who are living with sight loss.
The bloggers have different diagnoses, and their philosophies, cultures, and religious backgrounds vary, but what they all have in common is the courage to share. They are organized by year of diagnosis. Continue reading “The Courage to Share: 11 Blogs About Living with Sight Loss”
Friends, we need your help.
Yesterday, we learned that Kai has been misdiagnosed for 7 years! It’s not RP or Stargardts, it’s autoimmune retinopathy (AIR). If docs had listened & run proper testing his sight may have been saved. 😭 😡 😭
After 3 negative genetic tests, today Kai was officially diagnosed with AIR. 3 different retinal autoantibodies (AAb’s) were found and he’s being tested for a 4th.
Doc recommends one of 2 treatment paths: Continue reading “AIR? …We need your help & connections.”