The following article, originally published on is a work of fiction and is being republished from our Cane EnAbled series. Since we are reintroducing Abby to our audience we will share recycled as well as new content about her. We hope you enjoy!!
Going forward, 4 of our main series (Men In Motion, Women On The Move, B3 Magazine (formerly Blind Beauty), and Cane EnAbled) will be published monthly on Mondays). For example, Men In Motion will be published on the 1st Monday of each month, Women On The Move the 2nd Monday, B3 Magazine the 3rd Monday, and finally Cane EnAbled will be published on the 4th Monday. The balance of our content will be a mix of reviews, Q&As, and more.
Embracing Disability Through Self-Expression
I’ve always loved fashion and style. So when it came to my white cane I thought why not use it beyond its intended role? Why can’t it help express my inner sense of being, much like my hair, makeup, clothes, shoes, and jewelry?
Hi Everyone, Abby here! It’s been a while since I’ve last spoken with you. The boss lady (Steph) has me going hither and yon all while working behind the scenes. Today though, I want to talk about a topic near and dear to my heart―embracing disability through self-expression.
During my business trip to the UK, I met up with my friend Vicky (Victoria Claire) to accompany her to Dublin. As an Ambassador for Retina UK, Vicky serves to help people living with sight loss understand life is not over. She shares her message of hope through the 3 A’s―acceptance, adaptability, and accessibility.
Depending on the severity, acquiring a disability at any time during our lives can be a soul-crushing experience. There are a plethora of articles about the fear of blindness and how people feel it would end their life. It’s no wonder when we find ourselves in this very situation we balk and some of us give up. Granted, working through sight loss is a deeply personal ordeal and getting through it can be an ongoing process.
When we lose our eyesight it can feel like a small part of us is dying. Our whole world shifts and like a baby learning how to walk and talk, we have to learn to adapt. Sustaining a part of ourselves that’s familiar yet tweaked to our new life circumstance becomes a lifesaver.
Customized Colored Canes At Home & Across The Pond
For me, I’ve always loved fashion and style. So when it came to my white cane I thought why not use it beyond its intended role? Why can’t it help express my inner sense of being, much like my hair, makeup, clothes, shoes, and jewelry?
While there is some debate on using customized or more specifically colored canes, my canes are an extension of me. I believe what makes blind and visually impaired people stand apart from other cane users is our technique. Our canes are used to help us navigate by probing to let us know if there is an obstacle in our path.
So it was fabulous meeting up with Vicky, both of us with canes in hand (hers black and mine gold). Both of us noticed a significant difference in how we were received by those around in our respective countries and Dublin.
Here in the U.S., with the explosion of mobile devices, it seems like people aren’t really attentive to their surroundings in general. According to the National Highway Traffic Safety Administration Research Note “2016 pedestrian fatality count (5,987) is the highest number since 1990.”
In the UK when we were making our way through the airport people seemed to be oblivious to us using our canes. However, when we arrived at the Dublin airport the attitude was very different. It was immediately recognized that our mobility canes were for the blind.
Freedom To Express Ourselves
The hotel we stayed at was very lovely and had good lighting in the room, along with contrasting colors in the bathroom. We visited the Jameson Distillery which was really great and we also spent a lot of time walking. The River Liffey was well paved with decking and a nice and flat walk area for us.
When we went to the NewsTalk Radio Station Studio, they couldn’t have done enough for us. The conference, held in a large and well-lit conference room was very organized. Overall we had a great time in Dublin and I for one cannot wait to return one day soon. Vicky said it best:
The world can become a much more accessible place, somewhere we are all free to express ourselves and we are not stuck in a limiting space.
While I cannot speak for Vicky, I believe she would agree with me that those who choose to use the standard white cane rock as do we!
Abby is sitting cross-legged in her PJs (gray bottoms & white top with a gray collar). Her laptop on her laps has a teal Abby logo on the cover. Atop her signature explosive hairstyle, she is wearing a headset with a microphone. Her white cane is propped up next to her.
Abby & Teal Dress: Abby is holding up a teal dress on a hanger in her right hand. She is wearing a stylish black off the shoulder dress, black heels with ankle straps and a white hat with a black band with a loose end waving. In her left hand is her white cane.
Nothing brings out the crusader in us like becoming a parent, especially when we have a child with special needs. Gracie Benedith-Cane is a remarkable mother and crusader for her visually impaired son. A few months ago I wrote the following introduction to “3 Blind Mice Are Stylish Mice With A Purpose,” an article featuring Gracie‘s work.
One of the most pervasive and persistent misconceptions about blindness is the theory that we cannot appreciate beauty. What many people don’t understand about blindness is that it is not a matter of seeing vs not seeing. Blindness is a vast spectrum where the majority of people who are blind have some residual sight.
I’ve been following Gracie and her son Wani on Instagram for quite some time and what immediately caught my attention was her charming logo. The three blind mice who also happen to be the characters in Gracie’s children’s book “What’s Cool About Braille Code School?” are very stylish looking images. And of course, they look quite cool with their white canes. The book was “written to inspire, uplift and give confidence to children who are visually impaired as well as inform sighted children about braille and special needs awareness.”
As I said in my intro, though I’ve followed Gracie for quite a while, I’ve only recently spoken with her by phone. A request to feature her on Bold Blind Beauty ended up being a two-hour-long call. As a fellow parent and disability advocate, Gracie and I discovered we shared many commonalities. From the moment we greeted one another, we excitedly began talking about our work and exchanging ideas on how we might help one another.
Since Bold Blind Beauty’s Cane EnAbled series focuses in part, on parents of blind and visually impaired (B&VI children), Gracie agreed to answer some questions about her experience.
Since the majority of the world is sighted many people are never exposed to or know of people who live with blindness/sight loss. Before your son was diagnosed what was your level of understanding about how blind people live their lives?
I did not have any understanding about the lives of blind or even visually impaired people… I only understood the experience with watching tv shows like Little House on the Prairie when the character Mary went blind. That was my first experience in seeing how someone reads Braille as well.
Gracie, you are an incredibly fierce and passionate mom whose love for her children is undeniable. It must have been heartbreaking when you learned of Wani’s diagnosis. Can you tell us what led to his diagnosis and how it made you feel?
Well, when Wani was 2 months I saw that he had rapid movements in his eyes so I went to his pediatrician who then recommended me to go to an ophthalmologist. He examined Wani and told me Wani was not going to have 100% of his vision. At 11 months he had his 1st MRI and the findings were that Wani had Septo-Optic Nerve Dysplasia. I was DEVASTATED and the devastation lasted for almost 2 years! I felt lost, alone and confused as to what and why this all happened.
With Wani being your firstborn everything was new to you. After you received his diagnosis how did you manage his care? Were there service providers readily available to assist you to meet Wani’s needs and help him meet critical milestones?
His pediatrician, the wonderful Dr. Liza Natale gave me information about services and specialist for Wani. I got ALL the services meaning ophthalmologist, endocrinologist, and 5 therapists to come into my home 5 days a week to give him the therapy that he needed in his very young age.
From the moment we learn we are about to bring a baby into the world we have expectations of having a ‘perfectly’ healthy child. As a parent of multiple children with and without disabilities is there a difference in how you feel and/or interact with your children?
There is no difference on how I feel or interact with them. I give them all that they need when they need it. Giving them hugs, guidance, attention and most importantly LOVE! With Wani, I have to do things slightly different for better understanding and safety as to what he does not see and my 2nd child, my daughter Niara understands fully and even assists her brother in so many ways. Their relationship is So Special to see. My youngest son, 2 yr. old Zaire was just diagnosed moderately autistic and I have services and therapist in my home again. My Life!!
How did Wani’s sight loss influence you come up with the idea of your book “What’s Cool About Braille Code School?”
I was at an office called Invent Help to see about a patent for my product and the man whom I went to see kept looking at my 3 blind mice logo and told me that I should do something with them. It created ideas on how to use them. I saw how sighted children reacted to Wani everywhere we went. Wani did not have sighted friends. So I decided to write the book to give sighted kids a better understanding as to what the life of a blind child is like; to create a conversation and interaction between them.
What advice would you give to new parents who’ve received a diagnosis that their baby has a disability?
I would tell them that I can relate with their experience and that although they may feel whatever they are feeling they MUST be PROACTIVE! It is VITAL to be proactive, do the research on the diagnosis and seek all the services that their child needs. MOST of all I would tell them they are special people to have had a special needs child SO it is also vital to PRAY for guidance, LOVE and LEARN your child. By doing all of this I would promise them that all will be fine and that their child will begin to show them that all will be fine!
Would you like to share additional thoughts on blindness/sight loss or how we as a society can improve how we view disabilities in general?
I would like to share that no one should assume that when they see someone with a white cane or a wheelchair they should automatically feel so sorry for the person or assume they are not ABLE. Give them a moment/chance to show you their capabilities!! Also, society is so far behind on giving the blind and VI more access to supermarkets, clothing and toy stores! Braille should be EVERYWHERE not only on bathrooms, exits, and elevators… they want to be able to shop and do all the things sighted people can do.
There is no one-size-fits-all approach to raising a child with special needs and every family situation is different. However as a parent of a child with special needs, it‘s an instinct to learn all you can about their diagnosis to help them learn to live a fulfilling and independent life. Like Gracie said in her comment, she was at first devastated to learn of Wani‘s sight impairment then after a period of time, she discovered his particular needs and how best to help him to achieve his goals.
Featured Image: A photo of Wani and his two siblings. L to R Niara, two-year-old Zaire and Wani are standing outside holding hands. Wani is holding his white cane in his left hand.
Gracie is standing hugging Wani while they pose for the camera.
A gallery of three images of the blind mice: 1) the logo is an illustration of three blind mice each of whom is holding a white cane 2) cover of the book “What’s Cool About Braille Code School” contains the illustration of three blind mice who are standing in front of a school building in red and white coordinating school uniforms 3) the back of the book with a summary of the books content.
The second gallery of three photos: 1) Wani is standing with his white cane 2) a photo of sneakers with the right/left braille patches on the tongues 3) a clear package of the left/right patches.
“A very important thing every parent of a child who is blind needs to learn is braille. I started learning braille when Ashton was just a few months old.”
Feeling With The Heart Doesn’t Require Sight
“Sometimes when I need a miracle, I look into my son’s eyes and realize I’ve already created one.”
When my son, Ashton, was born and I was told he was blind I was heartbroken. Just thinking about the challenges ahead of him and all the things he would miss without sight was overwhelming.
I remember this cereal commercial where the mom shows her baby how to pick up and eat the cereal. Then she points for the baby to do likewise and of course, the baby does. I used to cry every single time I saw this commercial. My six-month-old son couldn’t sit up and he definitely couldn’t look at me to learn how to feed himself.
Looking back now I realize that I was wrong. You see, I thought he wouldn’t be able to do all the things I imagined and hoped he’d achieve. However, in the last seven years, I’ve learned the exact opposite of what I originally thought.
I am so thankful for Ash, he is one of the most amazing gifts and blessings. Navigating his world with him through touch and seeing it in a completely different way, has taught me so much. Ashton has taught us about the blind side of life. The side you don’t need sight to see but only your heart to feel.
I’d like to share more about Ashton’s journey, his accomplishments that mean everything, and the hard parts too. As a mom, I want to change the way others see having a child who is blind.
Receiving The Results
Let me start from the beginning. The day of Ashton’s diagnosis an ophthalmologist who had done an MRI of his brain called me with the results. I knew the news wasn’t good. She asked me to sit down. then she confirmed I wasn’t home alone. The reason being I’d have someone to talk with after she and I finished our phone conversation. She explained to me “Ashton is blind since his optic nerve did not develop the way it should have. It is called Optic Nerve Hypoplasia.” While she continued to into more detail about parts of the brain and nerves I tuned out and cried.
I remember sitting in a rocking chair holding Ashton and thinking of all the things he wouldn’t be able to do. It felt like my entire world was falling apart because I wasn’t able to give my child sight. In retrospect, it was one of the hardest days of my life.
I wish I could go back now and tell myself about all the amazing things Ashton would do. Things like:
he would learn to walk later than other kids yet he’d never give up
just like other kids he would learn to run, swim, and play
he would learn how to read braille
while not liking sports somehow skiing would become his favorite one
he would learn to sing his heart out and make everyone smile in the room
winning awards for his beautiful writing
I wish I could go back and encourage that young mom holding her visually impaired 4-month-old baby. But since I can’t I will share what I’ve learned with you.
The Medical Journey
There’ve been a significant amount of medical needs in Ashton’s journey. With his diagnosis of Optic Nerve Hypoplasia also came the diagnosis of Septo Optic Dysplasia (SOD). His optic nerve was underdeveloped during the 14th week of pregnancy, (this happens once in 10,000 births).
The diagnosis also affected Ashton’s pituitary gland, affecting his growth and hormone levels in his brain. In order for him to grow, we had to start giving him growth hormone shots at 5 months old. This was very hard; I still remember holding my baby and crying because he did not like getting the shots. He also has to take thyroid and hydrocortisone hormones in a pill form. However, administering pills was easier than shots.
In the past, when Ashton has gotten sick we’ve experienced some scary medical situations. The last time was the worst one because he had a fifteen minute seizure. We were life-flighted to Primary Children’s Hospital in Salt Lake City because of the gravity of the situation. For this reason, we have to be very careful when he gets sick because his immune system is not as strong as other children. His seizure came from having extremely low sodium after acquiring a stomach bug and vomiting all day. Now we keep anti-seizure medication on hand, in case we need it.
Monitoring Ashton’s health requires us to adjust his hormone dosage when he’s sick. This helps him regulate the stress his body is feeling and fight the sickness. Thankfully, we haven’t had any other seizure episodes and hope we don’t have to go through that again.
On top of his regular pediatric visits, Ashton has a great endocrinologist who he sees every three months and an ophthalmologist seen every year. We love all of his doctors and they have all been very sweet with our son in the 7 years they have been taking care of him.
Early Intervention Services
Let me tell you more about Ashton. He is the most determined little boy I’ve ever met. The best listener and the most curious and creative problem-solver. Ashton has received services from our local school of the blind since he was born. He was also able to get early intervention services from our local early intervention program. Both of these programs would send a home visitor who worked individually with my son.
I am so thankful for the help of the vision therapist from the school of the blind and the developmental specialist from early intervention. They helped me learn tools to help my son thrive in his development. We had physical therapists from early intervention who also helped my son reach milestones like crawling and walking. It’s amazing all the things I was able to learn from them. I don’t think I would’ve been able to teach my son all the things he learned in the first three years without all of these providers. Every parent of a child who is blind needs the help of these amazing services to help their child succeed.
Mainstream Learning With Adaptations
Now that Ashton is in first grade he has a vision tech with him 4 hours of the day. He is part of a regular education first-grade class and his vision tech transcribes everything in braille for him. In addition, he has an occupational therapist (OT), a physical therapist (PT), and an orientation and mobility specialist (O&M). All of these specialists work with him on different days of the week and pull him out of his class:
fine motors skills with his occupational therapist
gross motor skills with his physical therapist
learn how to use his cane to get around with his orientation and mobility specialist
I am so glad these professionals are able to work with my son and help him reach all of his educational goals.
The Importance Of Braille Literacy
A very important thing every parent of a child who is blind needs to learn is braille. I started learning braille when Ashton was just a few months old. I asked his TVI (Teacher of the Visually Impaired) from the parent-infant program at the school of the blind to teach me braille. She started leaving me tiny homework assignments like brailling the entire alphabet or recognizing the patterns the dots follow for certain letters.
The TVI also told me to try and write a letter to my son in braille. Due to the complexity of the task, I did some online research to find other braille courses I could take to help me. I found The Hadley Institute for the Blind had an online braille course for parents of children who are blind. I immediately signed up and started taking the course. This curriculum helped me the most to learn braille.
I started making braille labels for him around the house. One for his bookshelf that read “books” and one for his desk that read “desk.” I labeled his entire room because I wanted my son to start feeling braille. We also had many braille books, every Christmas and birthdays I would braille a children’s book for him. At first, it would take all day to braille one tiny children’s book but then I got much faster at brailling them.
By brailling them, I mean I was able to stick clear braille labels below the print on the books. Ashton achieved a great foundation of literacy because of his love for books. He continues to love reading and writing short stories and is able to recognize the braille alphabet.
Ashton The Writer
As Ashton has gotten older, I also learned a lot about blind people and how independent and incredible they are. I’ve met amazing blind adults at conferences for parents of children who are blind. I realized the only two things my son wouldn’t be able to do are reading small print, and driving a car. Everything else is possible and as he’s gotten older he’s shown me there’s so much more he can achieve.
Ashton has won awards for his writing in braille. He wants to be a writer and writes straight from his heart. He wrote a poem for his dad and won a State Award in a PTA Reflections contest. It was the sweetest poem about how his dad is his hero.
My Dad is My Hero
By Ashton Dunford
When I was born my dad helped me, he helped me to see.
He gave me my cane and I love him.
He holds my hands to teach me things, that is why he is my hero.
Ashton The Singer
Ashton also has a beautiful voice and loves to sing. He has sung in front of hundreds of people to support local nonprofit foundations in their fundraiser events. Bold and unafraid he stands up in front of a big crowd and sings his heart out. His favorite song to perform is “A Million Dreams” from The Greatest Showman. However, he has also sung the National Anthem at other events. He is incredible to watch on stage, always brings me to tears to see him up there with his cane and listen to him sing.
I am so proud of this little boy! Ashton has come such a long way and there’s really no limits to the things he will do in the future. I hope every parent of a child who is blind can understand that vision or the lack of it, will never stop their child from accomplishing big things. Lacking sight has never stopped anyone who is blind from achieving their dreams. I can’t wait to see all the things my son will accomplish as he gets older. He will teach others to see with their heart before seeing with their eyes, just like he has taught me.
Blindness | Braille | Unlimited Potential Featured Image Description:
Photo of seven-year-old Ashton who is blind wearing glasses. Ashton has dark hair and is looking in the same direction as the camera. He is wearing a blue button up shirt and a rust-colored cardigan. His mom’s hands, Hilda’s hands are on his shoulders, although you can’t see her face because the photo is just of Ashton’s beautiful brown eyes.
Additional Image Descriptions:
Ashton Skiing With Dad & Ski Instructor
Photo of Ashton holding a white bamboo pole, and wearing an orange neon vest that reads “Visually Impaired Skier”. He is also wearing a white ski helmet, black ski pants, and ski gloves. He is smiling while he stands in line for the ski lift, with his dad and his ski instructor.
Ashton in ICU
Ashton is laying on a hospital bed with an IV and his head completely bandaged in a room in the Intensive Care Unit. He is wearing a blue hospital gown and he has his eyes closed.
Hilda, Ashton & Little Sister
Hilda (mom) with dark hair in a rust jumper dress, is looking down at Ashton and smiling. He is standing right next to her holding her right arm and also smiling. He is wearing a blue button-up shirt under a rust cardigan. His three-year-old sister is standing in front of them smiling too.
Little Sister & Ashton At The Playground
Ashton is sitting on the top stair of a playground structure, looking towards the left. His white cane is resting on his knees and he is wearing a mustard-colored hoodie with blue pants and black vans shoes. His three-year-old sister is standing next to him on the right side and she is trying to look over the playground bars. She is wearing a mustard skirt, with a white shirt and black shoes. She also has dark hair and is wearing a gray bow to hold it back.
Ashton Reading Braille
Ashton is sitting at his kitchen table reading a braille book. He is looking in front of him as he feels the braille letters with both of his hands. He is wearing an olive-colored striped sweater. There is a sign behind him on the kitchen wall the reads “This is Our Happy Place”.
Ashton’s Poem “My Dad is My Hero”
Photo of a tan sheet of braille paper of Ashton’s poem: “My Dad is My Hero.” Next to the poem is a white paper with that reads: Ashton Dunford, honorable mention, Rees Elementary, My Dad is My Hero, Literature Entry, Special Artist Category. This was Ashton’s reflections entry that made it all the way to the state category, he won the District category, the Region category, and then got Honorable Mention for State.
Shows a family of 5 standing together. Hilda is holding her three-year-old daughter and smiling at her. Hilda’s daughter is smiling and looking towards the camera. Her husband Tyler is standing next to them and looking towards the left and smiling at Ashton holding his older sister’s hands.
The family is standing on fall leaves and behind them, there are trees and mountains, they are all dressed in nice clothes for family pictures. Mom is wearing a rust jumper dress with a striped long sleeve wine colored shirt underneath. Her three-year-old is wearing a big blue denim bow on her short dark hair, a gray ruffle long sleeve shirt under a mustard jumper skirt and tan boots. Her husband Tyler is wearing a blue dark denim button up shirt and brown pants with gray shoes. Ashton is wearing a blue button-up shirt with a rust cardigan over it and brown pants. His older sister, Jordan has long blonde hair and she is wearing a green olive dress and black boots. You can tell they are enjoying a beautiful fall evening in the mountains.
Trust Is Key To Unlocking Confidence & Independence
My other goal is to teach the community that people with visual impairments are just anyone else. They just use additional tools to access the world. This access should be universal and a normal part of day-to-day life.
My passion is teaching students to help them gain confidence and independence so they are successful adults. I work with students on accessing and using the technology and tools they need to live independently after they age-out of the system.
Oftentimes, students with visual impairments are led to believe they can’t be successful, independent adults. So the most important part of my job is building trust with them. This enables them to believe me when I tell them that they can do anything.
How Trust Delivers Results
I had an elementary student who lacked confidence and hesitated while crossing streets. His parents were fearful and did not want him crossing a street on his own either. He was a fourth grader and at this time was not independently doing what his peers were. Together we went out weekly rain, snow or shine to work, navigate the neighborhoods, and cross intersections. So he was able to walk to friends houses to play and hang out.
I never pushed him if he ever felt uncomfortable to cross. We would cross the street when he built up his confidence. He achieved all his goals that year and crossed at stop signs and even small, lighted intersections. Once he began, he advanced so quickly after he gained confidence and is now unstoppable.
Building trust with parents is crucial also. So after he mastered some of these skills, I invited his parents to a lesson. His parent’s witnessed how confidently their son now crosses intersections, independently and safely. Seeing him progress was so rewarding!
The Long-Lasting Effects Of Trust
Recently, a former student contacted me to tell me she was accepted to a dual masters program. This student and I worked together ten years earlier. I was beyond excited to hear that she is starting a master degree!
She has been living independently since starting her undergraduate degree. Now she is moving across the state by herself to start and complete her master’s program. This student also made a huge transition in her life and is transgender. I was so grateful to hear from her and learn that she trusted me enough to share with me, her transition. The trust and confidence that she has built is amazing!
Passion & Pursuit of Personal & Professional Goals
My other goal is to teach the community that people with visual impairments are just anyone else. They just use additional tools to access the world. This access should be universal and a normal part of day-to-day life. Part of my job is to teach awareness in local schools about the tools people use who are visually impaired. I also spread this awareness to the public about what helpful accommodations they can use. Along with how to help (or not help) people in the community.
Recently, I was teaching an accessibility workshop to third graders. One of the students stopped me before I walked into the classroom. She said she knew someone who was blind and felt sorry for them. My immediate response was there is no reason to feel sorry for someone who is visually impaired or blind. They are people just like you or me they just access the environment differently. I told her how I knew many successful people doing amazing things. They read by using braille and travel the community and even the world, independently with a cane. The cane helps them to “see” where they are going.
I began the presentation and thanked the students for coming to hear about how everyone can be independent and successful. Everyone just approaches it differently. This is one of the most important parts of my job, educating the public on how and when to help. To not pity visually impaired or blind people, but to appreciate how they navigate the world with the tools at their disposal. When the average person realizes how independent the VI community members are, it gives them a whole new level of respect. Respect is most important, not pity.
Featured Image Description:
A woman talking while holding up a white cane looking off camera. There are backs of participant’s heads watching the woman present about white cane safety.
Collage Image Descriptions:
Pedestrian Walk Sign: Woman (O&M instructor) is holding a folded white cane, smiling looking off camera, standing at a detectable warning next to a pedestrian walk sign.
Bus Stop Shelter: Woman (O&M instructor) smiling at camera holding a folded white cane standing next to a bus stop shelter.
A city bus.
Boarding Bus: The back of a woman (O&M instructor) walking onto a city bus.
Additional Image Descriptions:
Close up of Michele Danilowicz with long brown hair in her 30s smiling at the camera.
Two women presenting on cortical visual impairments. The power point presentation behind them says: “Tips for Providing Interventions cont.” One presenter is looking at the camera and smiling. The other presenter is looking at the audience holding up a red Elmo stuffed animal and a red and yellow stuffed monster. They are both standing behind a table full of red and yellow materials and toys.
Table with materials scattered across, a light up magnifier, dome magnifier, Braille writer, telescope, two vision simulation goggles, Braille book, large print book, large Braille cell drawn on paper with the numbers 1, 2, 3, 4, 5, 6 next to the dots and worksheets to learn Braille for print readers.