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”
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 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.”
In the early days of Kai’s diagnosis I scoured the web for blogs written by sighted parents of kids who were losing their vision. I could not find any. Sure, I could find advocacy and awareness web sites and consumer groups, but I craved emotional honesty from another mom. I wanted to read her feelings, understand her struggles, and celebrate her wins. I wanted to know her feelings about her child’s inclusion (or lack thereof) and understand the anger and frustration behind her educational accessibility battles. And, most importantly, I wanted to know what it felt like to be on the other side: to have raised a child who became a strong self-advocate, who is highly-educated and employed. I wanted to know my child could beat the grim statistics. Now, 7 years later, I have found 6 moms (+ me) who are blogging about their experiences and I am so excited to share them with you!
Each of these blogs is written by a sighted mom of a blind or VI child(ren). Our kids range in age from 1-20, they have different diagnoses, and our philosophies, cultures, and religious backgrounds vary, but what we all have in common is the courage to share. Continue reading “The Courage to Share: Blogs by Moms of Blind/VI kids”
Hi, This is Kim and I’m excited to share a blog post written by our extremely talented and adventurous friend Pamela Thistle of www.TheBlindThistle.com:
Hi, my name is Pamela Thistle and I have Usher Syndrome, which is Retinitis Pigmentosa and hearing loss. I’ve been wearing hearing aids far back as I can remember but it wasn’t until my early teens when the RP was discovered. My eye disease is slow-progressing and it wasn’t until I was in my late 30’s that I was deemed Legally Blind. It hit me hard and it was tough going for a year or so until I decided to fully embrace my disabilities. Since that moment my life has been a series of adventures and self-discovery. I am a retired Interior Designer but have discovered many interests over the years: photography, mountain biking, snowboarding, Olympic lifting and obstacle course racing to name a few. My motto in life is “No matter how hard it is or how many times I get my a$$ kicked I’m just gonna keep coming back!” Continue reading “What Do You See? by Pamela Thistle”
Seven years ago a pediatric ophthalmologist called me at work to say that our 10-year-old son’s retinas were deteriorating. I was so stricken and confused by the words he used – deterioration, progressive, no cure, no treatment – that before we hung up I asked him, “Are you telling me that he’s dying or going blind?” “Blind,” he replied.
The way the news was delivered was so shocking that the memory still brings a visceral pang of grief. With one quick phone call, our lives were changed. We learned that our precious, youngest son, Kai, would go blind. The life we had envisioned for our bright, active child would be dimmed by blindness. We were shattered. We had no template and no understanding of what it meant to live without sight. We had never even met a person who was blind.
Unfortunately, for the first several years our family had to go it alone. We live in a small rural area 3-hours from the nearest blindness advocacy group. Kai was the first child in our county to experience progressive vision loss. We had to chart our own path, figure out our options and make the necessary connections to obtain services for our son.
It’s been 7 years now and we’ve overcome so much. Our son is thriving because of a few very important factors which are highlighted in Kristin Smedley’s new book Thriving Blind.
“If there’s a book that you want to read, but it hasn’t been written yet,
then you must write it.” ― Toni Morrison
Thank goodness Kristin took Toni Morrison’s wisdom to heart and wrote Thriving Blind! Oh, how I wish that our doctor had sat us down and explained what to expect and that our son could still have a wonderful, rich, fulfilling life. Oh, how I wish our doctor had handed us a copy of Kristin’s book which introduces her two sons who were each diagnosed with blindness at 4-months of age. Continue reading “Is Your Child Thriving In The Midst Of Vision Loss? Is Your Loved-One Succeeding Without Sight?”