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When you lose your sight, it can make you feel incredibly lonely. The feeling of isolation, the snatch of your independence and the knock of your confidence with everyday life is a massive impact. The overwhelming feeling of grief is awful. You yearn for what you have lost, unknown whether it will return or not. At least that’s how we felt. I’m Laura. My first noticeable decline was February 2016 – the cause of which is still unknown. As time went on, I eventually lost my career as a lab…
A little bit about me: I am an 18-year-old high-school senior from St. Paul, Minnesota. I have Stargardt Disease and I’m significantly visually impaired. A couple of years ago I started a non-profit called Louie’s Vision that works to help kids with visual impairments find adventure. About a year ago, I approached my parents and told them I wanted to do the Ironman, a one-day race that consists of a 2.4-mile swim, a 112-mile bike ride, and a full 26.2-mile marathon. I was just 17 years old, had no experience…
My name is Dan Mancina, I am from Michigan outside of Detroit. I was born with retinitis pigmentosa (RP), a disease that has deteriorated my vision throughout my life. I have lost about 95 percent of my vision so far. I have been skating since I was about seven years old and am now 31. When I had lost the majority of my functional vision about six years ago, I stopped skating all together, and would not even leave my house without a human guide. I felt very lost and…
Ever since the era of the Founding Fathers, Washington, D.C. has been the de facto epicenter of political and social causes, playing host to millions of people from all walks of life gathering and marching across the striking backdrop of the National Mall. And earlier this year, another huge crowd gathered in another part of the city to support another important cause. Yes, there was lots of shouting, but this time it wasn’t in frustration or anger — it was shouts of jubilation and pride. After 44 years of struggle,…
I’ve grown over these past three years to enjoy braille. Every time I use my braille writer or slate and stylus to write, it’s hard to stop. Braille is great for me because I have glaucoma, a progressive eye condition that could blind me, so I must learn braille for my future as well as my braille teaching career. Glaucoma doesn’t scare me because I have braille as a back up in my life toolbox. Whenever I read a braille book with my blindfold on, I can find a mysterious…
I work at a non-profit organization that trains guide dogs for the visually impaired. As a “puppy Kindergarten manager,” I coordinate with dedicated volunteers and staff members to create a good foundation for our puppies who will grow up to be companions and guides. We expose them to body handling, different surfaces, and different noises in order to prepare them for the world outside the kennel environment. Then, at about 12 weeks old, our puppies go home with volunteer puppy-raisers for just over a year to be exposed to a…
My name is Dave Steele. I’m a singer and poet from the UK who, since being diagnosed with retinitis pigmentosa in 2013, has dedicated my life to raising awareness for visually impaired people worldwide through poetry and music. Following is a poem I wrote for my daughter, Ellie. The Secret It took me years to come to terms with how my eyes declined Through stages of acceptance of slowly going blind But nothing I could ever do would allow me to prepare To tell my little girl the thing I…
Hi, my name is Erica Powell! I am a fitness professional, marathon runner and national keynote speaker. #MyBlindStory started when I was 6 months old. I was diagnosed with a rare cancer called retinoblastoma-bilateral – cancerous tumors in my retinas. After numerous operations and aggressive treatment, I have now been cancer-free for over 20 years! But as a result of my radiation treatment, I have been experiencing progressive vision loss throughout my entire life. My vision really started to decline as I was hitting my teenage high school years, and…
I am a 14 year old blind skier, horseback rider, cross-country runner, Challenger Little League baseball player, singer, musician, voiceover artist, radio personality, advocate, student lobsterman and geek supreme from a small fishing village named Beals Island, Maine. Oh, and one more thing you should know, I’m a huge Boston Red Sox fan! I was born totally blind from a rare genetic condition known as Leber’s congenital amaurosis (LCA); because of this, I’ve been thrown lots of curveballs in my life. I’ve been bullied in school to the point of…
Young Guru Academy (YGA) is a non-profit organization founded in Turkey in 2000 that cultivates selfless leaders to realize the dream of a brighter future for the younger generations. One of the program’s graduates, Kürşat Ceylan, has emerged as an award-winning social entrepreneur who has spoken at the United Nations – and who is still leading the technologies that YGA develops, specifically those for visually impaired people. “YGA works on breakthrough social innovations to inspire people and give hope. Our latest technology is WeWALK, a revolutionary smart cane for the…
Yep, pretty typical. But my kiddos also each have a certain, not-so-typical aspect that makes them, well, them. Many people describe my children as extraordinary. But I don’t. High achievers? Yes. Resilient? You bet. But extraordinary? No.
However, it is my expectations for them and their expectations of how their lives will go that are extraordinary, and that is the game changer in our house.
Dictionary.com defines the word “extraordinary” as “beyond what is usual, ordinary, regular, or established.” An additional word used for extraordinary here is “remarkable.” My children have some qualities and experiences that are definitely different from other people – and at first I didn’t realize just how remarkable a life we would have because of that.
For a while I could only see the ordinary things my children did not experience like everyone else. I did not have the extraordinary or “beyond what is usual” expectation that they would indeed do the things they wanted to do because, unfortunately, the ordinary, usual way of thinking about my kiddos’ future was pretty bleak.
You see, my two sons (Michael, 17 and Mitchell, 14) are blind – and my daughter (Karissa, 13) was born into a family of full inclusion for them.
My boys have a rare inherited eye disease, LCA-CRB1. When I received the first of the double diagnoses seventeen years ago, all I could think of was, “He will never play baseball. He will never keep up with other kids. He will never drive.” I thought of all the childhood things my son would miss out on. I sobbed over my visions of him never having a full life.
Here’s the thing: I had never met a blind person before. Ever. I wasn’t given a handbook or even a pamphlet on how to raise a blind child. All I knew about blindness was nothing at all. With no experience with blindness, and no role models of success, my perception was that blindness was dark and devastating. Therefore, I expected a life of challenge and hardship. Unfortunately, everyone I knew had the same bleak outlook for my children.
I felt alone in my journey raising two blind children, however I was definitely not alone in my ordinary expectation of what their lives would be like.
I am by nature an optimistic person, so it was against my DNA to be living in such pessimism with a bleak outlook on the future. I knew that living in devastation wouldn’t get me and my boys very far, so I put on my happy face and marched off the couch and into life with blind children.
As I climbed out of the devastation ditch I was in, I came across the story about a man named Erik Weihenmeyer who had recently climbed to the summit of Mount Everest – and he is completely blind.
His story began to shift my perception of blindness, which changed my expectation of what might be possible for my blind sons. If Erik could manage climbing a mountain without sight, surely my guys could figure out preschool, right?
That shift in perception and expectations worked – Michael sailed through “regular” preschool. He had great social skills and was the happiest kid in his classes. I’d like to say Michael’s story of greatness began here and we had smooth sailing into the future… but my life’s challenges pretty much never have the easy-breezy, “Disney style” happy endings.
Although Michael had less than ten percent of the vision a sighted child had, he wasn’t expected to learn Braille because “he had so much vision that he’d fight it,” the professionals said. He was never introduced to the white cane because the professionals said, “You’re with him all the time and can hold his hand.” And when he got to Kindergarten, the Individualized Education Plan (IEP) team told me that Michael would only be expected to “find his cubby seventy percent of the time.” I knew we had a massive problem on our hands.
My son, like millions of other blind people, was only expected to have, at best, seventy percent of a full life. I was so not cool with that.
As I was scouring the internet for support groups, associations for the blind, and pretty much any and every one of the scarce resources I could get my hands on to find the tools of blindness my guys needed, I stumbled upon stories of blind adults that were succeeding without sight. I read about blind runners, musicians, and business leaders. I learned about assistive technology, Braille and mobility training. Wow, wow and wow!
My expectations for my sons’ lives were reaching new heights – but I was still sitting in IEP meetings where seventy percent was the goal.
And then a pivotal moment in my #MomLife: I found the statistic that took my breath away. Nearly seventy percent of blind people are unemployed. Seventy percent. Unemployed.
Seventy percent achievement looked darn good in a niche where only thirty percent were thriving! Seventy percent unemployment rate to me screams “CRISIS!” – but nobody else seemed alarmed.
Many, many people were screaming “CRISIS!” over a glass ceiling that was holding them and their children down, but no one seemed to care that my children weren’t being held down by just a ceiling – they were put in an entire box of non-achievement and hopelessness.
My boys needed to break out of the box, the stigma, that so many people around this world have for blind people. They had to soar beyond the usual, ordinary expectation that blind people cannot live as full a life as a sighted person. I had to set the extraordinary expectation that my guys could and would pursue the lives of their dreams and get them the tools they needed to do so.
We started with that Kindergarten IEP team. It took a while, but eventually the team agreed that the goals for Michael and later Mitchell had to be as far from the old ways as possible. If they were missing the cubby, or not reading at or above grade level, or falling behind in Honors Biology, strategies needed to be put in place to teach him how to succeed 100% of the time.
I had the extraordinary expectation that my boys would achieve their goals, pursue their interests, and be kind, thoughtful and productive community members.
The results? Well, they are both in high school and they are thriving – not just as blind children, but as kids in general.
They pursue their passions, they try new things, they excel at schoolwork, they have ups and they have downs. We are still learning the tools of blindness every day and we still constantly reach out to blind role models.
Michael is looking forward to college and Mitchell keeps everyone laughing. And just like so many brothers, they could not be more different – I think the only thing they have in common is their passion for our Philadelphia Eagles football team!
As for my daughter, well, the impact of living a life of full inclusion of her blind brothers was so extraordinary that I dedicated time in my recent TEDx talk to it.
I expect my children, the blind and the sighted, to pursue their passions and achieve their dreams. I expect that they each will achieve their personal greatness. And you know what? All three of my children expect that of themselves. That expectation is outside the norm of what many others hold for my kiddos – and I enjoy watching my gang open people’s eyes and minds every single day. It is, indeed, extraordinary.
Kristin Smedley is an author, non profit leader and TEDx speaker. She originally planned to be a third grade teacher… and then two of her three children were diagnosed as blind. Kristin now shares her journey of raising her kids to not just survive challenges, but to thrive! She speaks around the globe regarding blindness and resilience, and she just launched her new series teaching people to SEE: Set Extraordinary Expectations! Watch her TEDx talk here and get info regarding her new book here. If you are interested to have Kristin speak at your upcoming event, email her at smedtalk@gmail.com or contact her here!